Navigating new normals: the influence of COVID-19 policies on community access and well-being of people with mobility disabilities in everyday life.

Context: This study explores the influence of COVID-19 public health mandates on people with mobility disabilities in the United States in their everyday lives. It highlights the intersection of disability with social determinants of health, emphasizing the need for a comprehensive policy response. Methods: Qualitative data were collected through 76 semi-structured interviews with people with mobility disabilities. Interviews focused on experiences with COVID-19 mandates and community access, analyzed using thematic analysis and coded for emergent subthemes. Results: The relationship between community participation and COVID-19 compliance was complex for people with disabilities. Inaccessible environments and inflexible policies made it difficult for people with disabilities to practice good safety measures, while widespread noncompliance by community members limited their community participation. The findings revealed additional mixed lived experiences of COVID-19 policies on community participation, accessibility, and access to resources and support. While technology facilitated some aspects of community participation, issues with accessibility, public transportation, and personal assistance services were exacerbated. Conclusion: COVID-19 policies have complex implications for people with mobility disabilities. Findings suggest a need for inclusive policymaking, improved disability awareness, and continued support for accessible technology and services. Future research should further explore these dynamics to inform policy and practice.

Measuring disability among U.S. adolescents and young adults: A survey measurement experiment.

Objective: Disability is identified in surveys using various question sets, with little understanding of reliability across these measures, nor how these estimates may vary across age groups, including adolescents and young adults (AYA). The purpose of this study was to assess AYA prevalence of disability using two disability question sets and reliability of these measures. Methods: AYA participants in the Policy and Communication Evaluation (PACE) Vermont Study completed a single-item disability question used in the National Survey on Health and Disability (NSHD) and Urban Institute's Health Reform Monitoring Survey (HRMS) and a six-item set on functioning (Washington Group-Short Set, WG-SS) from the National Health Interview Survey (NHIS) and National Survey on Drug Use and Health (NSDUH) in 2021. Prevalence was estimated for any disability and each disability domain in adolescents (ages 12-17) and young adults (ages 18-25) and compared with U.S. national estimates in NHIS and NSDUH. Results: Using the WG-SS, the prevalence of any disability was 17.0 % in PACE Vermont adolescents and 22.0 % in young adults, consistent with the national prevalence of adolescents in NSDUH (17.9 %) but higher than estimates of young adults in NHIS (3.9 %) and NSDUH (12.9 %). The single-item question provided lower estimates of disability (adolescents: 6.9 %; young adults: 18.5 %) than the WG-SS, with low positive agreement between measures. Discussion: The prevalence of disability in AYAs varies depending on measures used. To improve disability surveillance, it may be necessary to validate new disability questions, including among AYAs, to capture a broader range of disability domains.

Piloting the effectiveness of the Workout on Wheels Internet Intervention (WOWii) program among individuals with mobility disabilities.

BACKGROUND: Doing any amount of moderate-to-vigorous physical activity yields health benefits. Individuals with mobility disabilities are among the least physically active Americans and limited evidence indicates effective strategies to promote physical activity among this group. OBJECTIVE: Examine whether a 16-week virtual intervention program (Workout on Wheels internet intervention, WOWii) increases exercise engagement among mobility impaired individuals. METHODS: Participants recruited through community organizations that provide services to individuals with disabilities. The WOWii program is comprised of 3 core components: 16 weeks of virtual intervention delivery and access to the WOWii website; staff and peer support; an exercise package that included an activity tracker and heart rate monitor, pedal exerciser, and therabands. RESULTS: Ten people enrolled. Participants demonstrated good program engagement, attending an average of 14.1 ± 2.1 of the 16 virtual meetings and completing an average of 10.6 ± 5.6 weekly activities. Exercise data revealed that participants increased their time spent in aerobic exercise from an average of two days a week performing 32 ± 22 min during week one to an average of five days a week doing 127 ± 143 min in the final WOWii week. Only half continued to exercise over the two months once WOWii virtual meetings ended. CONCLUSIONS: WOWii program delivery successfully promoted increased exercise participation for people with mobility disabilities over the 16 intervention weeks. Future studies should investigate approaches to promote exercise maintenance beyond program delivery.

Examining the effects of home modifications on perceptions of exertion and safety among people with mobility disabilities.

BACKGROUND: People with mobility disabilities often have reduced stamina and limited energy, making daily activities physically demanding. Home modifications, such as installing grab bars and optimizing the environment, have the potential to reduce exertion and enhance safety in the home, enabling individuals to participate more in other activities. OBJECTIVE: The purpose of this study was to evaluate the effects of a home modification intervention on perceptions of exertion and safety among people with mobility disabilities. METHODS: The study utilized the Home Usability Program (HUP), which aims to improve accessibility, safety, and independence in participants' homes. Participants were recruited from four Centers for Independent Living (CILs) across the US and underwent a comprehensive assessment to identify consumer-directed, individualized home modifications. Surveys examining safety and exertion, in addition to qualitative interviews, were conducted to explore the impact of the intervention on participants' energy levels and feelings of safety. RESULTS: Analysis of pre-post measures and participant interviews revealed that the HUP intervention resulted in decreased exertion. Decreased exertion had positive outcomes, including increased time for other activities, improved socialization, enhanced independence, and the potential for engaging in activities outside the home. Additionally, the HUP intervention led to increased safety, which positively affected mental well-being and independence. CONCLUSIONS: Findings highlight the need for useable living environments that minimize physical strain and reduce exertion. Policy recommendations include prioritizing accessibility standards for housing, implementing individualized assessments for funding home modifications, providing financial assistance options, and allocating research funding for innovative solutions and technologies.

Gender Diversity, Disability, and Well-Being: Impact of Delayed and Foregone Care Because of COVID-19.

Purpose: This study explored the impact of delayed and foregone care due to COVID-19 on well-being among disabled and gender diverse adults. Methods: Using data from the 2021 National Survey on Health and Disability and logistic regression modeling we assessed the impact of delayed or foregone care due to COVID-19 on well-being among disabled people (n = 1638), with comparisons between cisgender (n = 1538) and gender diverse (n = 100) people with disabilities. We report odds ratios (OR) and confidence intervals (CI). Results: Disabled people reported high rates of delayed (79.36%) and foregone (67.83%) care and subsequent negative effects on well-being (72.07%). Gender diverse disabled people were over four times more likely to have delayed any care (OR 4.45, 95% CI 1.86-10.77) and three times more likely to have foregone any care (OR 3.14, 95% CI 1.71-5.79) due to COVID-19 compared to cisgender disabled people. They were three times more likely to report any negative impact on their health and well-being because of delayed and foregone care (OR 2.78, 95% CI 1.43-5.39). Conclusion: The COVID-19 pandemic affected the health care utilization of disabled people, resulting in high rates of delayed care, foregone care, and negative impacts on well-being. These effects were intensified at the intersection of disability and marginalized gender identity, with gender diverse disabled people having higher odds of delayed and foregone care and negative effects on well-being, including physical health, mental health, pain levels, and overall level of functioning.

Injury-related emergency department use among people with intellectual and developmental disabilities insured by Medicaid from 2010 to 2016.

OBJECTIVES: Data on non-fatal injuries and visits to the emergency department (ED) for injuries are not readily available. The objective of this paper is to describe injury-related ED visits for people with intellectual and developmental disabilities who are covered by the Medicaid insurance programme. METHODS: We aggregated 2010-2016 Medicaid claims data from eight states. Using these data, we identified individuals with intellectual and developmental disabilities and then determined an all-cause ED visit rate, ED visit due to injury rate and admission from ED due to injury rate. Data were stratified by sex and age group. Results were compared with national rates. RESULTS: Medicaid members with intellectual and developmental disabilities visited EDs at approximately 1.8 times the rate of the general population. The ED visit rate due to injury was approximately 1.5 times that observed in the population overall. When ED visits due to injury data were stratified by age and sex, the largest discrepancy was observed in women ages 45-64, who visited EDs due to injury at a rate 2.1 times that of women of the same age in the general population. The admission rate from ED due to injury increased over the study period most notably in the older age groups. CONCLUSIONS: While rates and patterns of ED utilisation among Medicaid members with intellectual and developmental disabilities vary by age and gender, our findings suggest this group visits the ED due to injury at rates well above the general population.

Health Care Disparities Among Autistic LGBTQ+ People.

Background: Lesbian, gay, bisexual, transgender, or queer (LGBTQ+) people and disabled people experience disparities in access to health care compared with others. However, we have yet to understand how health care disparities may be further exacerbated at the intersection of disability and LGBTQ+ identity, particularly among autistic people. Objectives: The primary goals of this study were to (1) examine differences in unmet health care needs and health status between LGBTQ+ autistic people and straight/cisgender autistic people and (2) explore how state policies and demographics predict the unmet health care needs of the autistic LGBTQ+ people. Methods: We conducted a cross-sectional analysis using data from the 2019 National Survey on Health and Disability that included a subsample of autistic participants, with 62 LGBTQ+ adults and 58 straight/cisgender adults. To address our first study goal, we used an independent samples t-test, and to address our second study goal, we used Poisson regression. Results: The LGBTQ+ group reported significantly more days of poor physical and mental health, more co-occurring diagnoses, and more unmet health care needs than the straight/cisgender group. For LGBTQ+ people, protective state health care laws and a lower income resulted in significantly more health care needs being met. Conclusions: Findings from this study suggest that the intersection of an LGBTQ+ identity and autism is associated with greater disparities in physical and mental health as well as unmet health care needs; however, state policies prohibiting discrimination of LGBTQ+ people may act as a protective factor and result in fewer unmet health care needs. Future research should examine additional structural factors that may mitigate health inequities for autistic LGBTQ+ people.

Why is this an important issue?: More people in the autistic community identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) as compared with the general population. Previous research described poorer health outcomes and issues in accessing health care for LGBTQ+ people. We need to understand how identifying as both autistic and LGBTQ+ is related to health outcomes and getting health care needs met. This is important information to improve future health care access and reduce health care issues. What was the purpose of this study?: We wanted to see whether there were differences between autistic/LGBTQ+ people and autistic/straight/cisgender people in accessing health care and health status. We also wanted to understand what factors contributed to unmet health care needs for autistic/LGBTQ+ people. What did the researchers do?: Our team used data from the second wave of the National Survey on Health and Disability (NSHD) fielded from October 2019 through January 2020. The NSHD sample included 2175 disabled participants, and 120 participants of the sample self-identified as autistic. We compared responses of autistic/LGBTQ+ people with autistic/straight/cisgender respondents. We compared these two groups on responses related to the number of good mental and physical health days, number of unmet health care needs, and number of additional diagnoses. We also looked at whether a person's income, location, race, or ethnicity, as well as whether state laws that supported LGBTQ+ health care related to the increased unmet health care needs of the LGBTQ+ group. What were the results of the study?: The results suggested that the autistic/LGBTQ+ group reported fewer good health days, more unmet health care needs, and more diagnoses. The authors also found that state-wide health care laws that protected LGBTQ+ people related to more health care needs being met. LGBTQ+ people with a lower income also had fewer unmet health care needs. What do these findings add to what was already known?: These findings are like other studies suggesting that identifying as autistic and LGBTQ+ results in more unmet health care needs and poorer health status. Our study adds to what is already known by exploring how other factors relate to the increased unmet health care needs among autistic/LGBTQ+ people. What are potential weaknesses in the study?: The NSHD subsample was small that may affect the study findings. Our sample also lacked diversity and primarily included White non-Hispanic/non-Latine participants, and those living in urban areas. The lack of diversity limits the generalizability of our findings. There are also many other factors (e.g., culture and provider knowledge) that may relate to unmet health care needs in autistic/LGBTQ+ people. Future research should investigate additional factors related to unmet health care needs. How will these findings help autistic adults now or in the future?: The findings are important because few research studies have focused on health care access among autistic/LGBTQ+ people in the United States. This study indicates the health care system is not supporting positive health outcomes and health care needs of autistic/LGBTQ+ adults. We need to continue to develop ways to support training of providers to reduce unmet health care needs and support better health outcomes.

High-Intensity Functional Training: Perceived Functional and Psychosocial Health-Related Outcomes from Current Participants with Mobility-Related Disabilities.

BACKGROUND: People with mobility-related disabilities (MRDs) experience many personal and environmental barriers to engagement in community-based exercise programs. We explored the experiences of adults with MRD who currently participate in high-intensity functional training (HIFT), an inclusive and accessible community-based exercise program. METHODS: Thirty-eight participants completed online surveys with open-ended questions, with ten individuals also participating in semi-structured interviews via telephone with project PI. Surveys and interviews were designed to examine changes to perceived health, and the elements of HIFT that promote sustained participation. RESULTS: Thematic analysis revealed themes related to health changes following HIFT participation including improved physical, functional, and psychosocial health outcomes. Other themes emerged within the HIFT environment that promoted adherence for participants such as accessible spaces and equipment, and inclusive HIFT sessions and competitions. Additional themes included participants' advice for the disability and healthcare communities. The resulting themes are informed by the World Health Organization's International Classification of Functioning, Disability, and Health. CONCLUSION: The findings provide initial data on the potential effects of HIFT on multiple dimensions of health outcomes and contribute to the growing literature on community-based programs that are adaptable and inclusive for people with MRD.

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.

Disparities in Tobacco Use by Disability and Type: Findings From the 2019 National Health Interview Survey.

INTRODUCTION: People with disabilities report a higher prevalence of cigarette use than people without disabilities. However, evidence is limited on the relationships between disability type, degree of functional difficulty, and other tobacco product use. METHODS: Data from the 2019 U.S. National Health Interview Survey were used to estimate the prevalence and odds of tobacco product use for 6 disability types and degree of functional difficulty. Bivariate and multivariable analyses conducted in 2021 examined the associations between tobacco product use and disability type. RESULTS: Compared to adults who reported no difficulty, current cigarette use prevalence was higher for adults who reported a lot of difficulty/cannot do at all to vision (21.5% vs 13.1%), hearing (19.6% vs 13.6%), mobility (20.0% vs 12.9%), and cognitive (25.4% vs 12.9%) disability questions. The odds of current cigarette (AOR=1.32), pipe (AOR=1.85), and smokeless tobacco (AOR=1.57) use were significantly higher for adults who reported a lot of difficulty/cannot do at all to any disability question and significantly higher for current cigarette (AOR=1.24), e-cigarette (AOR=1.33), pipe (AOR=1.45), and smokeless tobacco (AOR=1.29) use for adults who reported some difficulty to any disability question than those who reported no difficulty. Pipe use was correlated with mobility difficulty (AOR=1.68), and smokeless tobacco use was correlated with hearing difficulty (AOR=1.95). CONCLUSIONS: People who reported difficulty with vision, hearing, mobility, or cognition had a higher cigarette use prevalence than people without disabilities. Other tobacco use differed by disability type. Future research should tailor tobacco interventions to reduce these disparities.

Examining the Impacts of the Coronavirus Pandemic and Social Distancing on the Health of People With Mobility Disabilities.

Objective: To understand the effects of the coronavirus pandemic on the health and participation of people with mobility disabilities living in the community. Methods: Participants responded to a survey designed to assess the effects of the coronavirus pandemic on their health and access to health care. Participants identified if various life situations were worsened, unchanged, or improved during the pandemic. Participants could provide further information on their improved or worsened lived experience in open-ended questions. Results: A total of 39 people with mobility disabilities responded to the survey. Results indicate that many experienced a worsening of life situations related to health, including access to medications, health care services, and transportation. Conclusions: Results show that many experiences were caused by the lack of appropriate policies, rather than the pandemic itself. Therefore, there is a need to modify pandemic preparedness plans and other policies to meet the needs of people with disabilities.

Association of Inadequate Provider Networks with Unmet Need for Health Services and Self-Employment among People with Disabilities.

People with disabilities (PWD) make up over a quarter of the U.S. population and often have complex medical needs. Insurance plans with narrow provider networks are growing in popularity despite concerns about limiting access to care, which may detrimentally affect PWD. This study used logistic regression to assess the relationship between inadequate networks and unmet health care needs and employment using the 2018 National Survey on Health and Disability (n= 1,009) adjusting for demographic and health factors. Having an inadequate network was associated with unmet needs (OR=5.56, 95%CI[3.33,9.28]) but not being employed for wages (OR=0.70, 95%CI[0.42,1.17]) or self-employed (OR=2.35, 95%CI[0.99,5.55]). There was an association between an inadequate network and selfemployment for those with good health (OR=3.37, 95%CI[1.19,9.57]). Providers for PWD should be aware of the role insurance quality can play in health outcomes. Policymakers should continue to monitor the impact of provider network adequacy on health outcomes.

Gender Identity, Disability, and Unmet Healthcare Needs among Disabled People Living in the Community in the United States.

Disabled adults and transgender people in the United States face multiple compounding and marginalizing forces that result in unmet healthcare needs. Yet, gender identity among disabled people has not been explored, especially beyond binary categories of gender. Using cross-sectional survey data, we explored the rates of disability types and the odds of unmet healthcare needs among transgender people with disabilities compared to cisgender people with disabilities. The rates of disability type were similar between transgender and cisgender participants with two significant differences. Fewer transgender participants identified physical or mobility disability as their main disability compared to cisgender participants (12.31%/8 vs. 27.68/581, p < 0.01), and more transgender participants selected developmental disability as their main disability compared to cisgender participants (13.85%/9 vs. 3.67%/77, p < 0.001). After adjusting for sociodemographic characteristics, the odds of disabled transgender participants reporting an unmet need were higher for every unmet need except for preventative services.

Assessing factors associated with social connectedness in adults with mobility disabilities.

BACKGROUND: People with mobility disabilities are likely to report limitations in community participation and social connectedness for a variety of reasons, including inaccessible physical environments, health issues, transportation barriers, and limited financial resources. Improving social connectedness is a public health issue and research shows its relation to overall health and life expectancy. OBJECTIVE: The purpose of this study was to (1) assess social activity, isolation, and loneliness among people with mobility disabilities compared to those with non-mobility disabilities and (2) understand factors associated with social connectedness among people with mobility disabilities. METHODS: An observational, cross-sectional analysis was conducted using data from Wave 2 of the National Survey on Health and Disability (NSHD) to test for differences between adults age 18-64 with mobility disabilities (n = 621) and those with other disabilities (n = 1535), in addition to tests within the mobility disability group. RESULTS: Adults with mobility disabilities were less likely than respondents from other disability groups to report feeling isolated (30.2% versus 35.2%), but these groups did not differ on measures of social activity or loneliness. Within the mobility disability group, being unemployed and in fair or poor health were predictive of greater loneliness, more isolation, and less satisfaction with social activity. CONCLUSIONS: Social connectedness is an important public health issue. This research helps to inform service providers and medical professionals about the personal factors affecting social connectedness among people with mobility disabilities.

Examining the effects of the COVID-19 pandemic on community engagement for people with mobility disabilities.

BACKGROUND: The COVID-19 pandemic and subsequent mandates upended community participation in the United States. People with disabilities were often more vulnerable to the adverse effects of the pandemic. Some areas of community participation affected for this population include employment, access to transportation, and social engagement and connection to others. OBJECTIVES: The purpose of this study was to explore the effects of the COVID-19 pandemic for people with mobility disabilities across a variety of topics related to community engagement including social interactions with family and friends, and access to caregivers, groceries, transportation, and employment. METHODS: A survey was administered to participants with mobility disabilities (N = 39). Participants were asked to elaborate on topic areas that they identified as being affected by the COVID-19 pandemic. Data analysis included descriptive statistics and a content analysis in search of themes from open-ended responses. RESULTS: Results indicate that access to family and friends was the most negatively affected topic related to participation, followed by access to food and groceries, transportation, employment, living independently, caring for others, and participating in the community in general. In response to these pandemic-related challenges, participants reported utilizing technology to connect with others and to get essential items delivered. CONCLUSIONS: Findings from this rapid research emphasize the need for emergency preparedness strategies, accessible and reliable resources related to technology use (e.g., Internet), and continued access to services for people with disabilities to maintain various aspects of community participation throughout the COVID-19 pandemic and in the future.

Understanding successful transition to independent living: A qualitative study of young adults with disabilities.

Background: Independent Living (IL) involves having choice and control over where and with whom one lives. People with disabilities are less likely to live independently than their peers without disabilities. Objective: The purpose of this study was to understand the perceptions of young adults with mobility disabilities regarding IL, how they define IL, and what advice they would give others considering living a more independent life. Method: Semi-structured interviews were conducted with six young adults with mobility disabilities who had successfully transitioned to living independently. A content analysis was used to identify emergent themes from the interviews. Results: Results indicate that participants had individualized perceptions of the definition of IL. Participants identified many barriers and facilitators to IL, including the physical layout of housing, available amenities, and social support. They recommended preparing for IL in advance and taking advantage of outside resources to enable a successful transition. Conclusion: Young adults with mobility disabilities define IL in various ways, which may have an impact on whether they consider their transition to IL successful. Findings can be used to guide recommendations for young people with disabilities to use to ensure a successful transition to IL.

Comparative Health Status and Characteristics of Respondents of the 2019-2020 National Survey on Health and Disability by Sexual and Gender Minority Status.

Purpose: We examined the health of sexual and gender minority (SGM) adults with disabilities compared with their non-SGM peers. Methods: The National Survey on Health and Disability is an internet-based survey fielded October 2019 through January 2020. We performed bivariate analyses to compare sociodemographic factors, disability type, and health behaviors between SGM and non-SGM adults. We estimated logistic regression models for dichotomous and count outcomes. Results: After adjustment, SGM adults with disabilities were more likely to report diminished measures of health status. Conclusion: SGM adults with disabilities in the United States experience disparities in self-reported health status compared with non-SGM peers.

Barriers to colorectal cancer screening for people with spinal cord injuries and/or disorders: A qualitative study.

BACKGROUND: Limited research has shown people with spinal cord injuries and/or disorders (SCID) are less likely to be up to date with colorectal cancer (CRC) screening and therefore more likely to be diagnosed with advanced stage CRC compared to people without SCID. OBJECTIVE: The aims of this study were to assess knowledge about CRC, CRC screening, and self-reported barriers to CRC screening for people with SCID. METHODS: Interviews with 30 individuals with SCID were conducted using a semi-structured interview guide, audio recorded, and transcribed. Coding was performed using a hybrid approach of inductive and deductive analysis. Thematic analysis was used to identify, review, and modify themes and sub-themes. RESULTS: Themes identified included barriers to CRC screening, such as socioeconomic, health system, transportation, psychological, and environmental or accessibility barriers. While most respondents were able to describe one CRC screening method (usually colonoscopy), knowledge of other screening modalities was limited. Low CRC literacy and misinformation about CRC screening appeared to increase respondent association between CRC screening and colonoscopy. While most respondents associated CRC screening with colonoscopy, almost half reported the colonoscopy preparation was the most substantial barrier to screening. CONCLUSIONS: In addition to addressing identified barriers such as accessibility and transportation, communication, and prevention interventions should be specifically targeted to ensure all people with SCID are informed about appropriate and various modalities and the benefits of screening. Specific, evidence-based guidelines on the use of stool specimens first with follow up direct visualization, if needed, should be developed for this population.