The hidden crisis: Long COVID's association with housing stability and home accessibility among people with disabilities.

BACKGROUND: The COVID-19 pandemic has given rise to the emerging phenomenon known as Long COVID, characterized by persistent symptoms long after the acute infection has passed. However, the relationship of Long COVID on housing stability and home accessibility remains underexplored. OBJECTIVE: This manuscript aims to comprehensively examine the association of Long COVID on housing stability and accessibility, identifying challenges faced by people with Long COVID and potential strategies to address them. METHODS: The study employs a cross-sectional mixed-methods approach, combining quantitative and qualitative methods. It analyzes data from 1533 people with disabilities, 514 with Long COVID and 1019 without Long COVID, to compare demographics, housing stability, financial concerns, housing problems, and home accessibility. Qualitative analysis extracts thematic insights from 13 participant narratives. RESULTS: Individuals with Long COVID exhibit significantly higher rates of housing instability (21.1 % v. 8.1 %, p < 0.001) and financial concerns, such as worries about high rent or mortgage (50.4 % v. 40.0 %, p < 0.001), compared to those without Long COVID. They also report more frequent issues with pests (30.0 % v. 23.5 %, p < 0.01) and mold (22.0 % v. 12.7 %, p < 0.001) in their homes. Qualitative analysis reveals financial setbacks, difficulties in obtaining support, and the challenges of home accessibility. CONCLUSIONS: Associations between Long COVID and challenges related to housing stability and home accessibility highlight the need for systemic changes, financial support, and advocacy. This research contributes to understanding Long COVID's challenges, informing policy development, and promoting compassionate responses, ensuring the well-being of people with Long COVID.

"Everything is a Mess. I'm Just Trying to Survive It.": Impacts of COVID-19 on Personal Assistance Services.

In the United States, eight million people have disabilities related to self-care (having serious difficulty with bathing and dressing). Of these, approximately 2.3 million receive paid personal assistance services (PAS) to assist with activities of daily living. The National Survey on Health and Disability asked a series of questions about the impacts of COVID-19 for disabled people including disruptions in PAS. We used data from an open-ended question "How did you manage without the help you needed in your home?" to bring light to both the importance of, and vulnerabilities associated with, receipt of PAS. Themes from qualitative responses (n = 108) included (1) causes of unmet need, (2) consequences of unmet need, and (3) adaptations to overcome the loss of PAS. Results provide compelling evidence about the importance of the personal care attendant workforce and needed policies to address worker shortages to support community-based living options.

Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy.

The Affordable Care Act mandated data collection standards to identify people with disabilities in federal surveys to better understand and address health disparities within this population. Most federal surveys use six questions from the American Community Survey (ACS-6) to identify people with disabilities, whereas many international surveys use the six-item Washington Group Short Set (WG-SS). The National Survey on Health and Disability (NSHD), which focuses on working-age adults ages 18-64, uses both question sets and contains other disability questions. We compared ACS-6 and WG-SS responses with self-reported disability types. The ACS-6 and WG-SS failed to identify 20 percent and 43 percent, respectively, of respondents who reported disabilities in response to other NSHD questions (a broader WG-SS version missed 4.4 percent of respondents). The ACS-6 and the WG-SS performed especially poorly in capturing respondents with psychiatric disabilities or chronic health conditions. Researchers and policy makers must augment or strengthen federal disability questions to improve the accuracy of disability prevalence counts, understanding of health disparities, and planning of appropriate services for a diverse and growing population.

Events Across the Life Course Contribute to Higher Mobility Impairment Rates in Rural U.S.

Purpose: This paper investigates how life events such as injuries, health insurance coverage, geography, and occupation contribute to mobility disability rates over time. Findings can inform policies and practices to address factors that may contribute to disability in rural and urban areas. Methods: We utilized 27 waves of the National Longitudinal Survey of Youth (NLSY) data from 1979 to 2016 to explore how past injury, occupation, health insurance coverage, and rurality predicted mobility impairment at ages 40 and 50 using regression analysis. Findings: Rural respondents reported significantly higher rates of mobility impairment at age 40 and age 50 relative to people living in urban areas, and were more likely to report injury, work in high exertion occupations, and experience several pain-related health conditions. Using logistic regression and controlling for race and education, we found that people had higher odds of experiencing mobility impairment at age 40 if they reported a broken bone in the last 10 years, reported ever being knocked unconscious, had any workplace injury from 1988 to 2000, or lived in a rural area. People reported lower odds of mobility impairment if they had more consistent health insurance coverage over time. Further analysis showed that people consistently uninsured over time were 91% more likely to report mobility impairment at age 40 than those consistently insured. Conclusion: A better understanding of environmental factors associated with disability such as access to insurance, risk exposures, resources, and other place-based behaviors can inform additional strategies for reducing the severity and duration of mobility disability.

Examining rural-urban disparities in perceived need for health care services among adults with disabilities.

Purpose: The purpose of this study is to parse out differences between unmet need and perceived need for health care services among rural and urban adults with disabilities in the United States. While unmet need focuses primarily on environmental factors such as access to health insurance or provider availability, perceived need relates to personal choice. This distinction between unmet and perceived need is largely ignored in prior studies, but relevant to public health strategies to improve access and uptake of preventive care. Methods: Using Wave 2 data from the National Survey on Health and Disability, we explored rural and urban differences in unmet and perceived health care needs among working-age adults with disabilities for acute and preventive services. Findings: Although we found no significant differences in unmet needs between rural and urban respondents, we found that perceived needs for dental care and mental health counseling varied significantly across geography. Using logistic regression analysis and controlling for observable participant characteristics, we found that respondents living in noncore counties relative to metropolitan counties were more likely to report not needing dental care (OR 1.89, p = 0.028), and not needing mental health counseling services (OR 2.15, p ≤ 0.001). Conclusion: These findings suggest additional study is warranted to understand perceived need for preventive services and the levers for addressing rural disparities.

The intersection of disability status and rurality in American Indian/Alaskan Native communities.

There is a noteworthy gap in the literature regarding disability in rural American Indian/Alaskan Native (AI/AN) communities. This is significant, as many tribal lands are in rural areas and AI/AN individuals experience some of the highest prevalence rates of disability. To address this gap, we used descriptive statistics to examine the intersection of AI/AN and rurality in disability prevalence. Results indicate that rural counties have the highest prevalence of disability for both Whites and AI/ANs and that AI/ANs experience higher prevalence rates than Whites. However, further analysis indicates that county makeup (counties with high prevalence of AI/AN in the general population) moderated this relationship. Specifically, rural counties with populations of at least 5% AI/AN had lower prevalence of AI/AN disability compared to counties with populations with less than 5% AI/AN. Further analysis is needed to unpack this relationship, but results might suggest that AI/AN communities may feature resilient and protective attributes, moderating the amount of disability experienced in rural AI/AN communities.

Transportation Patterns of Adults With Travel-Limiting Disabilities in Rural and Urban America.

Introduction: Lack of transportation is a significant barrier to community participation for many disabled adults. Living in a rural area introduces additional transportation barriers, such as having to travel long distances to access services or socialize, and limited public transit options. While the importance of transportation access is clear, the mix of different transportation options used by people with disabilities to participate in their communities is less understood, particularly among those who do not or cannot drive. Methods: We used data from the 2017 National Household Travel Survey to explore transportation behaviors among disabled adults in rural and urban areas and by four regions across the United States. We explored differences by transportation modalities (e.g., driver, passenger, public transportation, taxi/uber, walk) and trip purposes (e.g., social, independent living, healthcare, work). Our sample included 22,716 adults with travel-limiting disabilities. Results: Several geographic differences emerged among non-drivers. Rural non-drivers were less likely to take any trip, particularly for social activities, and reported using less public transportation or walking/rolling than urban non-drivers. Further, respondents from the Northeast were more likely to report using public transportation and walking/rolling options, relative to the Midwest, South, and West. Overall, disabled rural adults reported lower odds of giving up driving, even after controlling for socio-demographic and health characteristics. Discussion: These findings highlight the relative importance of different transportation modalities for participating in activities and the continued reliance upon personal vehicles, either as a driver or passenger, especially among rural disabled residents. Potential policy insights are discussed.

Reaching people with disabilities to learn about their experiences of social connection and loneliness.

BACKGROUND: People with disabilities experience higher rates of social isolation and loneliness than people without disabilities, but there is limited information about how these conditions are manifested in people with specific types of disabilities. OBJECTIVES: Using data collected as part of the second administration of the National Survey on Health and Disability (n = 2,132), our objectives were to determine if disability type and recruitment method added explanatory power to observed levels of social connectedness, after controlling for socio-demographic and environmental indicators. METHODS: We used hierarchical regression to evaluate how socio-demographic, disability, environmental, and recruitment type explained four outcome variables for different dimensions of social connectedness, including satisfaction with social activity, quantity of social connections, quality of social connections, and loneliness. RESULTS: Across all models, employment status (not employed), having mental illness/psychiatric disability, lack of transportation for social needs, and recruitment type (MTurk) significantly predicted lower levels of social connectedness. CONCLUSIONS: The study provides evidence that using alternative methods, such as MTurk, to complement conventional recruitment strategies can improve understanding of social isolation and feelings of loneliness among people with disabilities, particularly those with mental illnesses and/or psychiatric disorders who are less likely to be accessed through group affiliations, but who are at greater risk for experiencing social isolation and feelings of loneliness.

COVID-19 vaccination hesitancy among Americans with disabilities aged 18-65: An exploratory analysis.

BACKGROUND: It is important for people with disabilities to be vaccinated against COVID-19 because, as a group, they are at increased risk of severe outcomes. While there are multiple vaccines available to prevent COVID-19, a considerable proportion of Americans report some hesitancy to becoming vaccinated, including people with disabilities. OBJECTIVE: We conducted a study to explore what factors may contribute to COVID-19 vaccination hesitancy among Americans with disabilities. METHODS: We used Amazon's Mechanical Turk to survey 439 people with disabilities (ages 18+) about their concerns of the COVID-19 disease, vaccines, and hesitancy toward vaccination to learn more about factors that influence vaccination hesitancy. Concerns about vaccines were analyzed as a composite variable representing different dimensions such as: side effects, too new, developed too quickly, influenced by politics, and effectiveness. RESULTS: Results from a logistic regression indicate that concern about vaccines was the most significant predictor of hesitancy, even after considering demographic, economic, and geographic factors. Concerns about getting COVID-19, getting tested for COVID-19, trust in experts, education, and being a Democrat were negatively associated with hesitancy. CONCLUSIONS: These findings indicate that some groups of individuals may be more vaccination hesitant because they are more concerned about vaccine safety than COVID-19 infection. Public health messaging that focuses on the risks of vaccines relative to the risks of COVID-19 might be one strategy to reduce hesitancy and increase vaccination uptake. Messaging should also be tailored to specific disabilities (i.e. physical, mental, sensory), written in plain language, and disseminated in accessible formats.

A cross-sectional analysis of trust of information and COVID-19 preventative practices among people with disabilities.

BACKGROUND: Trust of information shapes adherence to recommended practices and speed of public compliance during public health crises. This is particularly important for groups with higher rates of high-risk health conditions, including those aged 65 and over and people with disabilities. OBJECTIVE: We examined trust in information sources and associated adherence to COVID-19 public health recommendations among people with disabilities living in metropolitan, micropolitan, and noncore counties. METHODS: We recruited participants using Amazon's Mechanical Turk (MTurk) and screened for disability status (n = 408). We compared sociodemographic groups with t-tests, Pearson's correlations, and Chi-square, as appropriate. We used linear regression to examine factors associated with trust in information and compliance with CDC recommended COVID-19 practices. RESULTS: Nonmetro respondents had the lowest trust ratings among all demographic groups, and reported significantly less trust in most information sources. Respondents aged 65 and over reported the highest compliance with CDC recommended practices, while those from nonmetro areas reported the lowest. A regression model for adherence to CDC recommended practices was significant (F = 11.87, P ≤ .001), and explained 33% of the variance. Specifically, increased adherence was associated with being over 65, female, and higher general trust scores. Decreased practices were associated with being nonwhite, nonmetro, higher trust scores in President Trump, and having a communication disability. CONCLUSIONS: Trust in information sources is associated with action. It is important to provide clear, consistent, and non-polarizing messages during public health emergencies to promote widespread community action.

Evaluating MTurk as a recruitment tool for rural people with disabilities.

BACKGROUND: Recruitment of people with disabilities often occurs through disability organizations, advocacy groups, service providers, and patient registries. Recruitment that relies exclusively on established relationships can produce samples that may miss important information. The MTurk online marketplace offers a convenient option for recruitment. OBJECTIVE: The paper compares samples recruited through (1) conventional and (2) MTurk methods to better understand how these samples contrast with one another and with national estimates of people with disabilities. METHODS: In 2019, researchers recruited 1374 participants through conventional methods and 758 through MTurk to complete the National Survey on Health and Disability (NSHD). We analyzed sample differences between recruitment groups with t-tests, Chi-square, and logistic regression. RESULTS: With the exception of race/ethnicity, the conventional and MTurk samples were significantly different on several dimensions including age, gender, education level, marital status, children living at home, and sexual orientation. The MTurk sample was overrepresented in lower income brackets. A significantly higher percentage of the conventional sample received SSI, SSDI, or both, compared to the MTurk sample (36.2% vs 12.8%) and had significantly higher rates of insurance coverage. Comparisons with American Community Survey data show that the conventional and MTurk samples aligned more closely with the general population of people with disabilities on different characteristics. CONCLUSIONS: MTurk is a viable complement to conventional recruitment methods, but it should not be a replacement. A combination of strategies builds a more robust dataset that allows for more varied examination of issues relevant to people with disabilities.

Differences in social connectedness and perceived isolation among rural and urban adults with disabilities.

BACKGROUND: Social isolation has been compared to smoking in terms of risk to public health. Some groups are at particularly high risk for these feelings, including people with disabilities and rural residents. Few studies have considered the potentially compounding effects of disability status and rural residency. OBJECTIVE: To evaluate how reported satisfaction with social participation and perceived isolation relate to the health of rural and urban people with disabilities, and to consider whether number of disabilities, living arrangement, and employment status were associated with differences in reported satisfaction with social participation and perceived isolation. METHODS: This observational, cross-sectional analysis utilized data from working-age adults with disabilities (n = 1246) collected by the Collaborative on Health Reform and Independent Living (CHRIL). RESULTS: There were significant associations between reported health and measures of satisfaction with social participation and perceived isolation (all ps < .001). Increased number of disability issues, not being employed, and living with at least one other person were associated with reduced satisfaction with social participation (ps < .01), and number of disability issues and not being employed were associated with increased perceived isolation (ps < .01). Urban residents reported feeling more isolated (ps < .05) and there were multiple predictor x geographic residency (rural versus urban) interactions. CONCLUSION: These results underscore the importance of considering geography as a factor in understanding satisfaction with social participation and perceived isolation and how these factors relate to health in people with disabilities.

Vocational Rehabilitation (VR) funding of job development and placement services: Implications for rural reach.

BACKGROUND: Results-based funding models can improve Vocational Rehabilitation (VR) client employment outcomes, but evidence suggests that gaps in services occur when provider risk is not compensated. OBJECTIVE: The purpose of this qualitative study is to learn how VR agencies deliver and pay for job development and placement services, the factors that shape decision-making, and the outcomes of such decisions. METHODS: Administrators from 40 VR agencies identified informants to take part in qualitative interviews about how their agency delivers, contracts, and pays for job development services. Interview notes were analyzed to identify themes and dimensions in the data. RESULTS: Gaps in provider services exist in rural communities, where provider risk is increased due to economic, transportation, and delivery barriers. Strategies to overcome barriers focused on expanding available providers by lowering requirement for provider entry, increasing recruitment activities by the VR agency, reducing financial risk in the form of incentives, tiered payments, and shared funding models, and increasing agency capacity and support. CONCLUSIONS: Strategies for effective VR service delivery are shaped by multiple factors and choice points at the agency level. A deeper understanding of the intended and unintended consequences of service delivery models is an important contribution to informed decision-making.

Underrepresentation of adolescents with respiratory, mental health, and developmental disabilities using American Community Survey (ACS) questions.

BACKGROUND: Disability prevalence estimates are used to identify populations, establish priorities and allocate funding for a broad range of federal, state, and local initiatives. Increasingly, these estimates are based on a set of six questions developed and tested for use in the American Community Survey (ACS). A key assumption about the ACS disability screeners is that they sufficiently capture the entire population of people with disabilities, but some studies indicate that certain disability groups are underrepresented. OBJECTIVES: The objective of this study is to explore potential underrepresentation of certain disability groups identified by the ACS disability questions. METHODS: We compared disability prevalence rates from two data sources for adolescents with disabilities, aged 14 to 16, who receive Supplemental Security Income (SSI, n = 2051). The Social Security Administration (SSA) provided disability determination data for each adolescent, and adolescents (or proxy-rater) provided baseline self-report data about functional limitation based on the six ACS disability questions. RESULTS: Approximately 17% of the sample did not endorse any ACS questions. Excluding SSA categories with cell counts less than 10, the top five conditions not captured by ACS questions included respiratory conditions (38%), mood disorders (28%), other mental disorders (27%), schizophrenic and other psychotic disorders (27%) and developmental disorders (20%). CONCLUSIONS: Our findings suggest that people with mental health and developmental disabilities and those with respiratory conditions are among those groups under-represented by the ACS disability questions. Changes or additions to ACS questions should be considered to ensure that all disability groups are addressed in public health planning.

Vocational Rehabilitation Agency Guidance on Social Media Use: A Policy Analysis.

Given vocational rehabilitation's (VR) substantial role in workforce development, it follows that agencies would encourage and support consumers using the most current job-seeking methods, including social media. Recent data, however, show that online strategies are limited in VR practice and that many agencies lack comprehensive policies to guide social media use. We conducted a qualitative analysis to examine current VR social media policies and procedures and offer recommendations for policy development. Through an examination of open coding of 22 policies and one guideline, we identified seven themes and 25 subthemes, which mapped onto recommended social media policy elements from research. Only two VR policies, however, covered themes in a comprehensive way, and only one policy acknowledged social media as a tool for consumer job search. This outcome is an oversight given the emphasis social media plays in employment networking, proof of performance, and skills demonstration when seeking employment.

Why stay home? Temporal association of pain, fatigue and depression with being at home.

BACKGROUND: Community participation is important to most people with disabilities despite the fact that common secondary conditions like pain, fatigue and depression may increase the difficulty of leaving home. Despite decades of research on these secondary conditions, little is known about how they are associated with being at home. OBJECTIVE: We used Ecological Momentary Assessment data to examine within subject fluctuation in these secondary conditions to examine their effect on the likelihood that participants remain at or return home. METHODS: Participants (n = 139) were recruited from a population based sampling frame to complete an Ecological Momentary Assessment that queried their location and experience with secondary conditions six times a day for two weeks. RESULTS: Between subjects secondary condition ratings averaged across time periods indicated that pain and depression were associated with the share of measurement periods that respondents reported being at home. Within subject results indicated that a standard unit increase in pain, fatigue and depression was associated with being home one to two days later. Within day results indicated that increases in pain and fatigue were associated with increased likelihood of being home later, but increases in depression were associated with lower likelihood of being home later. CONCLUSION: These results suggest there may be a complicated relationship among these secondary conditions and community participation with effects observed both across and within days. One interpretation suggests that secondary condition severity is tempered by adjusting participation. These results may have implications for intervening on these secondary conditions.

An investigation into the temporal scaling of community participation measurement.

PURPOSE: Community participation remains fundamental to contemporary models of disability. However, the effect of temporal scaling on the measurement of participation has not been explored. This study examined the similarities and differences between two different temporal scales (i.e., seven-day recall vs. in situ) on participation measurement. RESEARCH METHOD: We collected seven-day retrospective recall data using a self-report paper-and-pencil measure (i.e., the Brief Community Engagement Questionnaire) from a community-based sample (N = 525) of individuals who endorsed one or more items of the American Community Survey disability screening questions. A subset of these participants (n = 148) completed an ancillary ecological momentary assessment (EMA) study, which involved repeated, in situ, daily measurements of participation for two weeks. Corresponding participation items from each method were compared. RESULTS: Survey and EMA participation data were relatively consistent over repeated measurements, suggesting reliability across methods and temporal scaling. Consistency across activities was most evident for major activities that tend to require regular behavior (e.g., work and volunteering). Conversely, lower base rate behavior demonstrated less stability regardless of temporal resolution. CONCLUSION: Understanding the implications of temporal resolution for participation measures is valuable for advancing ecological participation models. Future research is needed to develop consensus on participation measurement and provide a solid basis for developing ecological models of participation.