Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

BACKGROUND: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. METHODS: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. RESULTS: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. CONCLUSIONS: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Community participation and staying home if you want: US adults with intellectual and developmental disabilities.

BACKGROUND: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. METHOD: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. RESULTS: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. CONCLUSIONS: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

Race/ethnicity and the use of preventive health care among adults with intellectual and developmental disabilities.

BACKGROUND: Past research has been dedicated to documenting disparities in use of preventive health care faced by racial and ethnic minorities. In addition, studies have looked at the disparities in use of preventive health care experienced by individuals with intellectual and developmental disabilities (ID/DD). There is little known research that examines disparities in preventive health care use by individuals with ID/DD who identify as African American or Hispanic. OBJECTIVES: This study aimed to determine whether National Core Indicators data demonstrate racial and/or ethnic disparities in the use of preventive health care. Further, this study examined whether those racial and/or ethnic disparities in the use of preventive health care persisted when the analysis controlled for other demographic factors. METHODS: Data were derived from the 2011 to 2012 administration of the Adult Consumer Survey of the National Core Indicators Project. The association of race/ethnicity and preventive health care was assessed using binary logistic regression models. RESULTS: There seem to be differences in receipt of preventive care by race/ethnicity. However, most of these differences were not significant after other person-level factors were accounted for. CONCLUSIONS: Race/ethnicity may be less of a factor in accessing preventive care among adults with ID/DD receiving services than among the general population.

Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated Early Adopters and In-Betweeners.

Direct support professionals (DSPs) are at increased risk of contracting COVID-19. A four-wave survey series was conducted, in part, to understand DSPs' COVID-19 vaccination experiences. Fourth wave data were used to compare those vaccinated against COVID-19 when they became eligible (early adopters) and those waiting at least three months before vaccination (in-betweeners). Findings indicated that in-betweeners were more likely to be female, younger, and people of color with lower education levels and annual incomes, with employers requiring COVID-19 vaccination to remain employed. COVID-19 vaccination motivators included protection for self, family, or people supported; an employer who mandated COVID-19 vaccination; and having had COVID-19 or knowing someone who did.

Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated and Unvaccinated Direct Support Professionals.

Direct support professionals (DSPs) may be at increased risk of contracting COVID-19 due to the proximal nature of their work. In response to the pandemic a three-wave study was launched to understand experiences of DSPs. An on-line national survey found that 70% of DSPs were vaccinated. Vaccinated DSPs were older and had higher education levels. Among the unvaccinated, 56% reported concerns about COVID-19 vaccination safety. Unvaccinated DSPs were more likely to report that the people they supported were also unvaccinated. Encouraging DSPs to get vaccinated to protect the people they support is essential. Paid time off, arranging for vaccinations, and setting an expectation for vaccination may encourage vaccination uptake among DSPs.

Examining Choice and Control for People With IDD Over Time.

Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice. Repeated measures mixed regression examined choice over time after controlling for age, support needs, residence type, and community type. We found significant increases in everyday choice making among IDD service users in Pennsylvania, but not in support-related choice. This study is the first to our knowledge to consider change in choice making, an important indicator of rights and inclusion for persons with IDD. By comparing three waves of data from the state of Pennsylvania (2013, 2016, and 2019), we were able to detect changes in choice making over time among home and community-based service (HCBS) users with IDD.

The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19.

Direct support professionals (DSPs) and frontline supervisors (FLSs) have critical roles in home and community-based services for people with intellectual and developmental disabilities. Low wages and high levels of responsibility created a long-term crisis in recruitment and retention and are exacerbated by the COVID-19 pandemic. A national sample of DSPs and FLSs were compared on demographics and work-related circumstances using data from the third Direct Support Workforce COVID-19 Survey. Significant differences were found in demographics, hours worked, wages, wage augmentations, and quality of work-life. Policy recommendations to address the worsening workforce crisis are provided.

Using the Independent Monitoring for Quality Program to Examine Longitudinal Outcomes for People With Intellectual and Developmental Disabilities.

The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article, we report on the history and characteristics of the IM4Q program, describe the key variables of interest, and highlight the trends in the key variables over 3 years of data collection (2013, 2016, and 2019). The descriptive results indicate mixed trends for the three areas of focus: comparable rates of people employed in community-based settings, less support-related choice, and better everyday choice-making outcomes.

Direct Support Professional and Frontline Supervisor Perspectives on Work-Life in a Pandemic.

Direct support professionals (DSPs) and frontline supervisors (FLSs) play an invaluable role in delivering home and community-based services to people with intellectual and developmental disabilities (IDD). DSPs provide support with employment, community living, developing social connections, health and well-being, and many other areas. FLSs' primary responsibility is to provide direction and guidance to DSPs in their work; however, they also frequently provide direct support to people with IDD. This workforce has been in crisis with high turnover and vacancy which threaten the inclusion of individuals with disabilities in their communities. The COVID-19 pandemic exacerbated an already fraught situation.

Nursing effort and quality of care for nursing home residents.

PURPOSE: The purpose of this study was to determine the relationship between nursing home staffing level, care received by individual residents, and resident quality-related care processes and functional outcomes. DESIGN AND METHODS: Nurses recorded resident care time for 5,314 residents on 156 units in 105 facilities in four states (Colorado, Indiana, Minnesota, and Mississippi). We linked residents' care times to their measures of health and functioning from Minimum Data Set assessments. Major variables were unit- and resident-specific minutes of care per day, process measures (physical restraints, range of motion, toileting program, and training in activities of daily living [ADLs]), outcome measures (ADL decline, mobility decline, and worsening behavior between the time study and 90-day follow-up), and covariates such as unit type and resident health status. We used multilevel analysis to examine staffing and quality relationships. RESULTS: Residents with toileting programs, range of motion or ADL training, and restraints received significantly more care from unlicensed but not from licensed staff. However, functional outcomes were not significantly related to care received from licensed or unlicensed staff, except for ADL decline, which was greatest for residents receiving more unlicensed minutes of care. Unit staffing level (licensed and unlicensed) was unrelated to any of the care processes or outcome measures, although higher overall staffing was associated with more time devoted to direct resident care. IMPLICATIONS: Future research into nursing home quality should focus on organization and delivery rather than simply the amount of care available.

Who recommends long-term care matters.

PURPOSE: Making good consumer decisions requires having good information. This study compared long-term-care recommendations among various types of health professionals. DESIGN AND METHODS: We gave randomly varied scenarios to a convenience national sample of 211 professionals from varying disciplines and work locations. For each scenario, we asked the professional to recommend the appropriate forms of long-term care. RESULTS: Although the professional respondents used the full spectrum of options offered to them, some professionals tended to favor the sector they worked in. Advanced practice nurses recommended day care and homemaking more and adult foster care less. Gerontologists used skilled nursing-facility placement more actively and rehabilitation, homemaking, and home health care less actively. Geriatricians and primary care physicians both favored rehabilitation and skilled nursing-facility care and were both less enthusiastic about assisted living, homemaking, and informal care, but the geriatricians favored day care more than did the primary care physicians. Registered nurses were highly supportive of assisted living, adult foster care, homemaking, and home health care, and they opposed skilled nursing-facility care. Social workers were less likely than other participants to endorse rehabilitation and adult foster care. IMPLICATIONS: Because consumer preference should be a major factor in making long-term-care decisions, many consumers need information about what options may best fit their situation. In the absence of empirical data on which types of long-term care work best for whom, consumers have to rely on expert judgment-but that judgment varies. Clients should be aware that an expert's background (as defined by discipline and work situation) may affect his or her recommendations. Each discipline appears to have its own set of experiences and beliefs that may influence recommendations.

Nursing home staffing standards: their relationship to nurse staffing levels.

PURPOSE: This study reviews staffing standards from the 50 states and the District of Columbia to determine if these standards are related to nursing home staffing levels. DESIGN AND METHODS: Rules and regulations for states' nursing home staffing standards were obtained for the 50 states and the District of Columbia. Nurse staffing data were obtained from the Centers for Medicare and Medicaid Services On-Line Survey, Certification, and Reporting (known as OSCAR) database. The minimum hours per resident day (HPRD) staffing standards for each state were categorized according to the following: no state-specific HPRD standard (adheres only to federal staffing guidelines); low HPRD standard (< or = 2.5 HPRD); and high HPRD standard (> 2.5 HPRD). A series of hierarchical linear models examined the relationships between state staffing standards and actual facility staffing (total, licensed, and certified nurse aide HPRD), using a number of covariates. RESULTS: The variance in facility staffing was much greater within than between states. Facilities in states with high staffing standards had somewhat higher staffing than states with no standards or low standards, whereas facility staffing in states with low standards was not significantly different from that in states with no standards. Other factors, such as resident acuity and average state Medicaid rate, also were related to staffing. IMPLICATIONS: State staffing standards may not be effective policy tools because they are only one of many factors that affect facility staffing levels. Setting a low minimum HPRD standard may fail to raise staffing, or it may even have a dampening effect on staffing rates in facilities.

Estimating the patient care costs of teaching in a teaching hospital.

PURPOSE: Because leaders at medical schools and teaching hospitals need current data to estimate the clinical costs of graduate medical education, the authors developed a new methodology to estimate the hospital costs associated with the presence of teaching physicians for the year 2002. METHOD: A hospital accounting system was used to determine the case mix-adjusted direct variable costs for 41,522 inpatient admissions associated with or without a teaching physician. RESULTS: Prior to adjustment, teaching cases had greater median costs than non-teaching cases. After severity adjustment, teaching cases in aggregate were associated with an additional 4.4% of the total direct variable cost of inpatient admissions, or US 3.6 million dollars. The size of the teaching effect varied by service, ranging from -5.7% for medical services to 13 percent for behavioral services. The effect of teaching on cost centers such as laboratory, pharmacy, and radiology varied by specialty service. Teaching was associated with a negligible 0.7% relative difference in length of stay. CONCLUSION: The incremental effects of teaching on hospital patient care costs are modest. These analyses can be repeated annually to detect changes in teaching costs and to target areas of excessive cost for interventions that improve efficiency. Our results and methods for identifying hospital costs associated with teaching services may prove useful in negotiations between academic health centers and affiliated teaching hospitals.

Impact of adulthood stage and social-environmental context on body mass index and physical activity of individuals with intellectual disability.

Individuals with intellectual disability (ID) are at risk for obesity and physical inactivity. We analyzed a subset of 2009-2010 National Core Indicators (NCI) database to examine (1) the impact of three adulthood stages- younger (20-39 years), middle (40-59 years), and older (60 years and older) on Body Mass Index (BMI) and physical activity (PA); and (2) the relationship between social-environmental context (i.e., residence type, everyday choices, and community participation) and BMI and PA, with adjustment for individual characteristics of the adults with ID. Findings highlight the need to pay more attention to obesity by providing health education and emphasizing healthy choices. Results also suggest the importance of community participation as a way of promoting more physical activity.

Correlates of everyday choice and support-related choice for 8,892 randomly sampled adults with intellectual and developmental disabilities in 19 states.

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.

Demographic characteristics, health conditions, and residential service use in adults with Down syndrome in 25 U.S. states.

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.

Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states.

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.

Overweight and obesity among adults with intellectual disabilities who use intellectual disability/developmental disability services in 20 U.S. States.

The authors compare the prevalence of obesity for National Core Indicators (NCI) survey participants with intellectual disability and the general U.S. adult population. In general, adults with intellectual disability did not differ from the general population in prevalence of obesity. For obesity and overweight combined, prevalence was lower for males with intellectual disability than for the general population but similar for women. There was higher prevalence of obesity among women with intellectual disability, individuals with Down syndrome, and people with milder intellectual disability. Obesity prevalence differed by living arrangement, with institutional residents having the lowest prevalence and people living in their own home the highest. When level of intellectual disability was taken into account, these differences were reduced, but some remained significant, especially for individuals with milder disability.

Place of residence affects routine dental care in the intellectually and developmentally disabled adult population on Medicaid.

OBJECTIVE: To compare the likelihood of intellectually and developmentally disabled (ID/DD) adults receiving a dental cleaning across places of residence. DATA SOURCES: Medicaid and Minnesota's Medicaid Management Information System (MMIS) databases. STUDY DESIGN: All adults with DD assessments in MMIS in 2001-2002. DATA EXTRACTION METHODS: All completed DD assessments in 2001-2002 linked to Medicaid utilization data for same recipients for same years. CONCLUSIONS: The most disabled individuals are generally least likely to receive a dental cleaning. Individuals living in their own or a family home are less likely to receive the procedure than those living in ICF/MRs or a group home, even after controlling for disability, with those living in a group home falling in between ICF/MR and own/family home residents. The level of preventive dental care that ID/DD adults receive in community settings may be inadequate, particularly for persons living in own homes or with family.