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.

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities.

We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.

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.

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.

Posttraumatic growth and flourishing in the face of racial trauma.

OBJECTIVE: Examining well-being in the face of racial trauma is timely, clinically significant, and severely understudied, especially in Black populations. To address this gap, we investigated the relationship between flourishing and posttraumatic growth among Black undergraduates who reported a history of racial trauma. METHOD: Participants were 96 Black college students recruited from a predominantly White Midwestern university, all of whom reported experience of racial trauma. Participants completed the Flourishing Scale and Posttraumatic Growth Inventory (PTGI) in an online survey. Most were women/cisgender female/female (66.67%) and identified as religious (66%); 47% were first-generation college students. The average age of the sample was 21.14 (SD = 5.46). RESULTS: We analyzed Flourishing and PTGI scores for students who were able to identify/recall a racially traumatic event/experience using linear regression. Results indicated that after controlling for sociodemographic factors, scores on the PTGI significantly predicted Flourishing scores and accounted for 29.4% of the variance. CONCLUSIONS: These findings suggest that those who are able to deepen connections with others, tap into their inner strengths, gain new perspectives and a new appreciation for life, and connect to spirituality not only grow but are more likely to report flourishing. Contributing empirical evidence to the reliability (α =.91) and validity of the Flourishing Scale for Black college students, our findings also have implications for educators and clinicians interested in helping Black students grow and flourish in the aftermath of racially traumatic events. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Risk Adjustment in Home and Community Based Services Outcome Measurement.

The purpose of this study was to review and evaluate existing research that used risk adjusters in disability research. Risk adjustment controls for individual characteristics of persons when examining outcomes. We have conducted a systematic review and an evaluation of existing studies that included risk adjusters for outcomes of people with disabilities receiving services (home or community based). The process included coding each study according to the type(s) of risk adjusters employed and their relation to the specific population and outcomes within a framework. Panels were utilized to prioritize the risk adjusters. Findings indicate that four risk adjusters can be tentatively recommended as potential candidate risk adjusters: chronic conditions, functional disability, mental health status, and cognitive functioning. Holistic Health and Functioning far outweighed other outcomes studied to date. Further, there is a need for testing recommended risk adjusters across multiple outcomes and different populations of people with disabilities.

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.

Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive supports as the lack of stable, reliable supports can negatively impact their important day-to-day outcomes (e.g., safety, community participation, and choice). Turnover also comes at a cost to provider organization in the hiring and training of new employees. To retain DSPs, organizations offer incentives (e.g., bonuses, retirement plans, health insurance). This study utilized National Core Indicators® (NCI®) Staff Stability Survey 2018 data to examine the relationships between wages, different types of incentives, including benefits (e.g., paid time off, access to health insurance, disability insurance, wage bonuses, health incentives programs, etc.) to annual turnover in participating states in the United States. Results indicated that incentives were not positively associated with DSP retention. Staff wages were the most notable factor associated with differences in DSP retention rates, along with the state in which the organization was located as well as organization vacancy rates.

Factors associated with use of medication for behavioral challenges in adults with intellectual and developmental disability.

BACKGROUND/AIMS: Persons with intellectual or developmental disabilities and who exhibit challenging behaviors are often prescribed medication to control behavior. Little is known about the environmental factors that may be associated with taking these medications. METHODS AND OUTCOMES: This study examined the association between individual and intermediate or environmental factors and the documented use of medication for clients with intellectual or developmental disabilities (IDD) who exhibit challenging behavior, using the 2014-15 National Core Indicators Adult Consumer Survey dataset. RESULTS AND CONCLUSIONS: Individual-level variables associated with a higher likelihood of taking medication for persons with IDD exhibiting challenging behaviors included being of younger age, male gender, having moderate or severe intellectual disability, being ambulatory, communicating verbally, having a behavioral plan, requiring support for behavioral challenges, and having a history of mental illness. Environment-level variables included infrequently eating out and having less everyday choice. This study found that restrictions in opportunities to make choices in their life was associated with a greater likelihood of being on a medication for persons with IDD who exhibit challenging behavior. Living in group home settings also increased the likelihood of medication use. A limitation of the study is a lack of information on why medications were prescribed and whether they were intended to treat the challenging behavior. IMPLICATIONS: This work has important implications for health providers, as addressing malleable social factors may provide an avenue for reducing challenging behaviors without the need for medication.

Predictors of Annual and Early Separations Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a broad range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) that enables people to live, work, and participate in their communities. Despite the crucial importance in ensuring supports for community participation of people with IDD, high rates of annual turnover among DSPs in organizations that employ them have been documented for decades. This study utilizes National Core Indicators Staff Stability data from 2016 to examine the impact of organizational- and state-level factors related to DSP turnover, including annual DSP turnover and the percentage of DSPs who left their positions after less than 6 months. At the organizational level, a higher turnover rate in the last 12 months was significantly related to lower DSP wages and to not offering health insurance. At the state level, a higher turnover rate in the last 12 months was significantly related to a lower percentage of people living in individualized settings and lower per capita Medicaid spending. For early turnover at the organizational level, a higher percent of leavers within 6 months of tenure was significantly related to not offering paid time off and health insurance, higher vacancy rates, higher proportion of part-time DSPs, and lower overall staff sizes.

Psychotropic Medication Use for Adults with Autism Spectrum Disorder who Receive Services and Supports Through Adult Developmental Disability Services in the United States.

Individuals with autism spectrum disorder (ASD) have higher rates of co-occurring diagnoses and use of psychotropic medication prescriptions than people with other developmental disabilities. Few studies have examined these trends in samples of people with intellectual and developmental disabilities (IDD) with and without ASD. Using a random sample of 11,947 adult IDD service users from 25 states, co-occurring diagnoses and psychotropic medication use were compared for those with and without ASD. Regardless of diagnosis, individuals with ASD had higher percentages of psychotropic medication use. Controlling for co-occurring condition, age, gender, and ID level, a diagnosis of ASD predicted number of medications used. Further research is needed to understand why individuals with ASD are prescribed more medication, more often, than similarly functioning groups of individuals without ASD.

Communication Deficits Among Surgical Residents During Difficult Patient Family Conversations.

OBJECTIVES: To qualitatively analyze videotaped data of surgical residents and fellows interacting with standardized patients to identify communication weaknesses. To correlate our qualitative data with their quantitative scores. DESIGN: We used discourse analysis to identify negative communication patterns among 10 surgical residents and fellows who were tested on interpersonal competencies during an objective structured clinical examination in 2014. We then correlated our findings with the validated evaluation outcomes. Descriptive statistics were then used to quantify our findings. SETTING: The setting was an objective structured clinical examination performed in 2014 using standardized patient surrogate family members. PARTICIPANTS: The participants were a mix of first and third year surgical residents and critical care fellows. RESULTS: The item that most strongly differentiated the bottom 5 from the top 5 performers was not answering the patient appropriately. This was exhibited in 3 ways among the lowest performers in our study: (1) paternalism, (2) vagueness, and (3) dehumanization. Our statistical analyses showed that the overall number of negative communication behaviors correlated with negative staff scores (r = -0.653, p < 0.05). Dehumanization and paternalism were the 2 behaviors most strongly correlated with negative staff scores (r = 0.796 and 0.781 respectively, p < 0.01). CONCLUSIONS: We found the lowest performers responded inappropriately to the patient, which we further delineated into vagueness, paternalism, and dehumanization. We propose positive communication strategies be taught to residents to improve how they are perceived by patients.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities.

BACKGROUND: State-level factors have not been examined in research on choice, despite findings of between-state differences. AIMS: To examine both individual and state-level factors associated with choice. METHODS AND PROCEDURES: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. OUTCOMES AND RESULTS: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. CONCLUSIONS AND IMPLICATIONS: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual differences.