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In the United States, data on the number of people with intellectual or developmental disabilities (ID/DD) living in institutional and other congregate care settings have been gathered and reported since 1977 through the Residential Information Systems Program (RISP) at the University of Minnesota (e.g., Prouty & Lakin, 1997). These data were originally gathered through surveys of licensed residential settings (until 1982) and more recently through surveys of state and sub-state administrative agencies responsible for residential services. This paper combines data from the RISP project (covering people with ID/DD living in the US residential service system) with data from the NHIS-D (covering people with ID/DD in the non-institutionalised US population) to estimate the distribution of the US population with ID/DD living in each of several types of residential settings. Based on the NHIS definition of institutions, it was assumed for the purposes of this paper that people living in congregate settings with 4 or more others were not represented in the NHIS-D. People in congregate settings were identified using the RISP reports. (Contains 1 table and 1 figure.)

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract: On December 13, 2006, after over two decades of advocacy efforts, the United Nations adopted the Convention on Rights on Persons with Disabilities (CRPD). More than 150 countries have ratified or at least signed this international convention, to date. An important component of CRPD implementation is a systematic effort to evaluate whether and what extent the rights as stated in the CRPD are being upheld by individual countries. The purpose of this paper was to contribute to a U.S. and international discussion about monitoring the rights of persons with disabilities as codified by the CRPD by examining the potential use of the National Core Indicators Adult Consumer Survey (NCI‐ACS) for this purpose. The NCI‐ACS collects annual quality outcome data from over 13 000 people with intellectual and developmental disabilities in 46 U.S. states. A crosswalk between the CRPD Articles and the 2013–14 NCI‐ACS was conducted to map the survey questions onto the CRPD. Forty‐seven variables from the NCI‐ACS focused on different aspects of disability rights were identified as related to 12 CRPD Articles, suggesting a moderate overlap between the NCI‐ACS and the CRPD. Next steps are discussed. [ABSTRACT FROM AUTHOR]

This article reviews 43 U.S. studies assessing adaptive and challenging behavior outcomes associated with people with intellectual and developmental disabilities (IDD) who moved from institutions to community residential settings. These studies were published between J977 and 2010. Longitudinal and comparison group studies were selected based on a set of screening criteria. Seven of 11 treatment/comparison group studies reported that people who moved had statistically significant improvements in adaptive behavior skills compared to those who stayed in the institution. The movers in four remaining studies had improvements in adaptive behavior that were not large enough to be statistically significant. Of 27 longitudinal studies, 15 reported statistically significant improvements in adaptive behavior and 5 showed nonsignificant positive change. Only 5 reported decreases in adaptive behavior, including 3 that found statistically significant decreases. Of 26 studies that examined changes in challenging behavior, 8 reported statistically significant changes (5 showing significant improvement in challenging behavior and 3 showing significant worsening of challenging behavior). The consistently positive changes in adaptive behavior skills in studies conducted over the course of 33 years support earlier conclusions that people with IDD gain skills when moving from an institution to a community setting, although they may or may not experience improvements in challenging behavior. [ABSTRACT FROM AUTHOR]

Objective. We identified trends in the receipt of preventive health care by adults with intellectual and developmental disabilities by type of residential setting. Methods. We used data from the 2008-2009 collection round of the National Core Indicators (NCI) program. Participating states drew random samples of adults receiving developmental disabilities services. The study was observational, with both self-report and report by proxy. Once the random samples were drawn in each state, data were collected using the NCI Adult Consumer Survey. Trained interviewers administered the survey in person. Results. The likelihood of a person receiving preventive care procedures was related to age, level of intellectual disability, mobility, health status, and state. Type of living arrangement also affected whether a person received these health services, even after controlling for state, level of disability, and other personal characteristics. In general, people living with parents or relatives were consistently the least likely to receive preventive health exams and procedures. Conclusion. With growing numbers of adults being served in the family home, educational and policy-based efforts to ensure access to preventive care are increasingly critical. [ABSTRACT FROM AUTHOR]

This study describes service users with Down syndrome (N = 1,199) and a comparative sample with intellectual and developmental disabilities but not Down syndrome (N = 11,182), drawn from National Core Indicator surveys of adult service users in 25 U.S. states. Individuals with Down syndrome were younger than were individuals without Down syndrome. Men with Down syndrome were older than women with Down syndrome, whereas the reverse was true of the individuals without Down syndrome. Most (68%) people with Down syndrome had mild or moderate intellectual disability. The prevalence of vision impairment, hearing impairment, and physical disability increased with age. Adults with Down syndrome were more likely to have Alzheimer's dementia, have a hearing impairment, or be overweight, but they were less likely to have a physical disability than those without Down syndrome. Adults with Down syndrome were less likely to live in institutions or their own home, but they more likely to live in a family member's home. The results of a logistic regression showed that participants were more likely to be reported to be overweight if they had Down syndrome, were female, and were physically inactive, but they were less likely to be reported to be overweight if they were older, had more severe intellectual disability, had cerebral palsy, or were not independently mobile. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The article discusses the "Healthy People 2010" survey, which aims to improve health in the U.S. It mentions one of its objectives which is "Reduce to zero the number of children aged 17 years and younger living in congregate care facilities." It also presents statistical tables and data on children and youth with intellectual and developmental disabilities living in congregate settings by age from1977 to 2009.

The article examines the changes in residential arrangements of persons with intellectual and developmental disabilities in the U.S. after the Supreme Court's ruling on the case of Olmstead v. L.C. Under the case, the court declared that unjustifiable institutionalization of a person with disabilities is discrimination even with proper support. It states that the decision has reduced the number of people with mental retardation residing in public or private residential facilities.

The article focuses on the expenditure for Medicaid intermediate care facilities for the mentally retarded (ICF/MR) and Home and Community Based Services (HCBS) programs for fiscal years 2004-2009 in the U.S. It claims that expenditure for these programs rose from 27.436-billion dollars in fiscal year (FY) 2004 to 37.269-billion dollars in FY 2009. It relates that these programs provide financial assistance to states to give supports for people with intellectual or developmental disabilities.

This study describes uptake of augmentative and alternative communication systems by adults with intellectual disabilities; their ability to self-report at interview; differences in self-reported loneliness experiences by communication mode; and predictors of loneliness. We analyzed National Core Indicators data from 26 US states involving over 13,000 service users grouped by primary means of expression: natural speech, gestures/body language, manual signs, or communication aid/device (aided AAC). Uptake of aided AAC was low; only 0.8% of participants used aided AAC as their primary means of expression. Valid interview responding was higher in turn for participants communicating with natural speech, aided AAC, and other modes. Almost half the participants were lonely, but loneliness did not differ by communication mode used; social contact and social climate variables predicted loneliness. Individuals who used aided AAC communicated more effectively than users of other non-speech modes, supporting more widespread use of aided AAC. Loneliness was prevalent but aided AAC users were not lonelier. Interventions to reduce loneliness are discussed. [ABSTRACT FROM AUTHOR]

The article focuses on the enforcement of residential services for people with intellectual and developmental disabilities on the Year of Community Living launched by President Barack Obama in June 2009. It says that the Year of Community Living begins on Olmstead's 10th anniversary and ends on the 20th anniversary of Americans With Disabilities Act (ADA). It presents several charts which compare the total number of persons with disabilities who received residential services from 1988 to 2008.

Several charts are presented that depict the changes in service recipients and expenditures in medicaid long-term services and support programs for persons with intellectual and developmental disabilities from 1998 to 2008 in key states in the U.S.

The article focuses on a research that evaluates the connection between the U.S. Supreme Court case Olmstead et al. v L.C. et al. and institutionalized persons with intellectural and developmental disabilities. It cites the Court's ruling that Title II of the Americans With Disabilities Act (ADA) requires states to provide community services to people with disabilities rather than institutional services. The article examines rates of depopulation of institutions before and after Olmstead.

The article focuses on the statistical changes of persons with intellectual and developmental disabilities living in state institutions from 1977 to 2008 and the state-by-state changes from 1998 to 2008. It discloses the steady increase in the percentage of residents with psychiatric or behavioral disorders and the 18% overall increase in residents aging 40 years and older. It presents the tables and statistical figures of the changes in the characteristics and numbers of residents.

The article focuses on the improvement in the number of people with intellectual and developmental disabilities (IDD) who reside in nursing facilities in the U.S. from 1988 to 2007. It says that people with such disabilities began to reside in nursing facilities since the inception of Medicaid in 1965 whererin their care was entitled for federal cost share under Medicare. It mentions that in the span of 20 years between 1988 and 2007, the number of people with IDD have decreased. It notes that every state aimed to lessen the nursing facility use and expand community residential services and consumer directed services. It adds that the Congress passed the Omnibus Budget Reconciliation Act of 1987 (OBRA-87) which limit criteria for admission to Medicaid-reimbursed nursing facilities.

Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy makers. Direct support staff recruitment, retention, and competence are widely reported as one of the most significant barriers to the sustainability, growth, and quality of community services for people with developmental disabilities (ANCOR [2001] State of the states report. Alexandria, VA: ANCOR; Colorado Department of Human Services, [2000] Response to Footnote 106 of the FY 2001 appropriations long bill: Capacity of the community services systems for persons with developmental disabilities in Colorado; Hewitt [2000] Dynamics of the workforce crisis. Presentation at the NASDDDS Fall meeting. Alexandria, VA). While long in existence, these challenges are ones of growing concern because the number of people demanding community services is increasing and the population of people from which to recruit workers is declining (Office of the Assistant Secretary for Planning and Evaluation [2006] The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, ASPE, U.S. Department of Health and Human Services). As the service system moves towards consumer direction, managed care, and more noncategorical service delivery systems, the difficulties of providing for an adequate and well-prepared workforce to support people with developmental disabilities becomes more complex and multifaceted. The solutions to those challenges are also more complex. This article reviews the literature regarding the complexity of the direct support workforce crisis, the effects of this crisis on various stakeholder groups, promising practices designed to address the challenges, and the related practice and policy implications. © 2007 Wiley-Liss, Inc. MRDD Research Reviews 2007;13:178–187. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Mental Retardation is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Ten years ago, we published a summary of all US studies published between 1976 and 1988, inclusive, that measured behavioural outcomes associated with the movement of people with mental retardation from public institutions to community residential settings. Those studies found with remarkable consistency that positive adaptive behaviour changes were associated with people moving from institutions to community homes. Now, we revisit this topic to examine whether research conducted since 1988 has continued to support these earlier findings. In this review of literature, 33 of 250 US studies of residential service outcomes met our inclusion criteria of scope, quality, timeliness and design (longitudinal or contrast group study). As in our earlier review, almost all of the reviewed studies found statistically significant increases in overall adaptive behaviour scores associated with deinstitutionalisation. Three studies published since 1990 reported statistically significant improvements in challenging behaviour associated with movement to the community, and nine reported no significant differences in challenging behaviour for persons who moved compared with persons who remained in institutions. [ABSTRACT FROM AUTHOR]

Studies the recruitment and retention in small community homes supporting persons with developmental disabilities in Minnesota. Factors and outcomes reported by supervisors; Average of direct support professional turnover rates in small group homes for people with developmental disabilities; Factors related to recruitment and retention challenges.

Identifies recruitment challenges and costs by administrators from randomly selected agencies that provide residential, vocational and other services to persons with developmental disabilities in Minnesota. Difficulty of finding qualified applicants; Common recruitment activities; Vacancy rates in direct-support positions and first-line supervisor positions.

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.

Two non-U.S. quasi-experimental studies reported Active Support training was associated with increased engagement in individuals with IDD, but no randomized controlled trials (RCTs) exist. We evaluated effects of Active Support training on staff assistance, and social and nonsocial engagement in 75 individuals with intellectual and developmental disabilities (IDD) in U.S. group homes. We detected no significant effects of active support training. Individuals with more skills and less challenging behavior engaged more in nonsocial activities. Younger individuals with more skills living in homes with fewer staff changes were more socially engaged. Factors associated with nonsocial engagement mirrored those reported in Qian, Tichá, Larson, Stancliffe, & Wuorio, (2015) . Staffing-related implementation challenges and statistical power limited our ability to detect differences.

This article examines everyday choices made by 8,892 adults with intellectual and developmental disabilities (IDD) and support-related choices made by 6,179 adults with IDD receiving services from 19 state developmental disabilities program agencies that participated in the 2008-2009 National Core Indicators Project. Controlling for physical and sensory impairment, age, behavioral support, communication, and state, people in residential settings with 16 or more people had less everyday choice than those in other living arrangements. People with mild and moderate IDD had more control over everyday choices when living in their own homes, whereas people with severe and profound IDD had more control when living in agency homes of 3 or fewer residents. For people of all levels of IDD, institutional settings of 16 or more residents offered the lowest levels of everyday choice. Controlling for the same covariates, individuals with all levels of IDD living in their own homes had significantly more support-related choices than those in any other residential arrangement. Controlling for individual and residential setting characteristics, the state in which sample members lived was notably predictive of support-related choice. Overall, the tested variables accounted for 44% of the variability in everyday choice and 31% in support-related choice.