Long COVID Among People With Preexisting Disabilities.

Objectives. To document the prevalence of long COVID among a sample of survey respondents with long-term disabilities that existed before 2020 and to compare the prevalence among this group with that among the general population. Methods. We conducted a cross-sectional, descriptive study using data from the 2022 National Survey on Health and Disability (n = 2262) and comparative data for the general population from the federal Household Pulse Survey (HPS). Results. The prevalence of long COVID was higher among people with preexisting disabilities than in the general population (40.6% vs 18.9%). Conclusions. People with preexisting disabilities experienced and continue to experience increased exposure to COVID-19 and barriers to accessing health care, COVID-19 vaccines, and COVID-19 tests. These barriers, combined with long-standing health disparities in this population, may have contributed to the greater prevalence of long COVID among people with disabilities. Public Health Implications. The needs of people with disabilities must be centered in the response to the COVID-19 pandemic and future pandemics. (Am J Public Health. 2024;114(11):1261-1264. https://doi.org/10.2105/AJPH.2024.307794).

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.

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.

Medicaid Expansion as an Employment Incentive Program for People With Disabilities.

Before the Patient Protection and Affordable Care Act (ACA), many Americans with disabilities were locked into poverty to maintain eligibility for Medicaid coverage. US Medicaid expansion under the ACA allows individuals to qualify for coverage without first going through a disability determination process and declaring an inability to work to obtain Supplemental Security Income. Medicaid expansion coverage also allows for greater income and imposes no asset tests. In this article, we share updates to our previous work documenting greater employment among people with disabilities living in Medicaid expansion states. Over time (2013-2017), the trends in employment among individuals with disabilities living in Medicaid expansion states have become significant, indicating a slow but steady progression toward employment for this group post-ACA. In effect, Medicaid expansion coverage is acting as an employment incentive program for people with disabilities. These findings have broad policy implications in light of recent changes regarding imposition of work requirements for Medicaid programs.

Availability of Medicaid home- and community-based services for older Americans and people with physical disabilities.

This article provides an overview of Medicaid home- and community-based services (HCBS) for older adults and individuals with physical disabilities by describing eligibility criteria, availability, and types of services. All 50 state Medicaid programs provide supplementary HCBS in addition to mandatory services. The amount, type, and eligibility for HCBS varied widely between states. Variation in service provision and eligibility rules has led to a patchwork of services from state to state, with the same person eligible for services in one state but not another.

Effect of Medicaid Expansion on Workforce Participation for People With Disabilities.

OBJECTIVES: To use data from the Health Reform Monitoring Survey (HRMS) to examine differences in employment among community-living, working-age adults (aged 18-64 years) with disabilities who live in Medicaid expansion states and nonexpansion states. METHODS: Analyses used difference-in-differences to compare trends in pooled, cross-sectional estimates of employment by state expansion status for 2740 HRMS respondents reporting a disability, adjusting for individual and state characteristics. RESULTS: After the Affordable Care Act (ACA), respondents in expansion states were significantly more likely to be employed compared with those in nonexpansion states (38.0% vs 31.9%; P = .011). CONCLUSIONS: Prior to the ACA, many people with disabilities were required to live in poverty to maintain their Medicaid eligibility. With Medicaid expansion, they can now enter the workforce, increase earnings, and maintain coverage. Public Health Implications. Medicaid expansion may improve employment for people with disabilities.

Why a national high-risk insurance pool is not a workable alternative to the marketplace.

The Pre-Existing Condition Insurance Plan (PCIP) was a national high-risk pool established under the Affordable Care Act (ACA) to provide coverage for individuals with preexisting conditions who had been uninsured for at least six months. It was intended to be a temporary program: PCIPs opened in 2010 and closed in April 2014. At that point, those with preexisting conditions could shop for health insurance in the marketplaces, where plans are prevented from using applicants' health status to deny coverage or charge more. This issue brief draws on the PCIP experience to outline why national high-risk pools, which continue to be proposed as policy alternatives to ACA coverage expansions, are expensive to enrollees as well as their administrators and ultimately unsustainable. The key lesson--and the principle on which the ACA is built--is that insurance works best when risk is evenly spread across a broad population.

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.

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. CONCLUSION: 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.

Counting everyone: evidence for inclusive measures of disability in federal surveys.

The US Census Bureau has used the American Community Survey six-question set (ACS-6) to identify disabled people since 2008. In late 2023, the Census Bureau proposed changes to these questions that would have reduced disability prevalence estimates by 42%. Because these estimates inform funding and programs that support the health and independence of people with disabilities, many disability researchers and advocates feared this change in data collection would lead to reductions in funding and services. While the Census has paused-but not ruled out-the proposed changes, it is critical that alternate, more inclusive disability questions be identified and tested. We used data from the 2023/2024 National Survey on Health and Disability to explore alternative questions to identify disabled people in national surveys. A single broad question about conditions identified 11.2% more people with disabilities, and missed significantly fewer people with psychiatric disabilities compared to the current ACS-6 questions. A combination of a broad question and the existing ACS-6 questions may be necessary to more accurately and inclusively identify people with disabilities.

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.

Strategic insights from a Delphi study: enhancing employment for multiply marginalized people with disabilities.

Introduction: The employment landscape for multiply marginalized people with disabilities presents significant challenges, exacerbated by intersecting identities such as race/ethnicity, sexual orientation, gender identity, poverty, and geography. Recent studies highlight the compounded employment disparities faced by this group, including discriminatory hiring practices, inadequate accommodations, and uneven gains in employment during the COVID-19 public health emergency. Methods: Our study employed a three-round Delphi process with 20 diverse experts across 14 states across the United States (U.S.) to formulate recommendations for improving employment experiences for multiply marginalized people with disabilities. The panel's insights were gathered through surveys administered online, with each round designed to refine the collective recommendations. This iterative process aimed to build a consensus on the most effective policy and practice recommendations for improving employment outcomes within this population. Results: The Delphi study identified key areas for strategic focus, including emergency preparedness, education and training, transportation, assistive technology, workplace accommodations, and combating discrimination and stigma. Notable recommendations included improving emergency preparedness training, enhancing employment education, increasing funding for accessible transportation and assistive technology, and promoting inclusive hiring practices. The study also emphasized the need for policies supporting telework and simplifying disability-related benefits. Discussion: The findings highlight the critical role of tailored strategies to address employment challenges faced by people with disabilities from marginalized communities. Meaningfully and fully implementing these recommendations would create a more inclusive environment that improves employment outcomes for multiply marginalized people with disabilities.

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.

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.

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.

Experiences of patients with disabilities and sexual or gender minority status during healthcare interactions.

Aim: The purpose of this study was to examine the lived experiences of lesbian, gay, bisexual, transgender, queer, and other (LGBTQ+) people with disabilities when interacting with healthcare professionals related to their gender identity, sexuality, and disability. Subject and Methods: Historically marginalized groups face many inequities in health care. However, little is known about the intersectional experiences of LGBTQ+ people with disabilities when receiving health care given their likelihood to encounter multiple marginalizations. Data were collected via the 2019 National Survey on Health and Disability (NSHD) and included a sample of 197 LGBTQ+ respondents with disabilities living in the U.S. Quantitative data and demographics were analyzed using descriptive methods. Qualitative data were analyzed using deductive and inductive methods. Results: 72.2% of LGBTQ+ respondents with disabilities avoided discussing their gender or sexual identity with their healthcare providers, with 9.8% never disclosing their identity. Qualitative analyses revealed themes centered around experiences of negative interactions with healthcare providers, including fear, distrust, and avoidance of care (40.1%), dismissal or denial of treatment (30.5%), and assault or aggressive activity (4.1%), although some reported no problems or need to discuss their LGBTQ+ or disability identities (14.7%). Conclusion: LGBTQ+ people with disabilities reported high rates of negative experiences disclosing gender or sexual identity and/or disability with healthcare providers. Further research is needed to determine whether negative interactions with medical providers may be caused by a lack of medical understanding, false assumptions about the de-sexualization of disabled people, or ignorance about LGBTQ+ identities.

The Affordable Care Act's pre-existing condition insurance plan: enrollment, costs, and lessons for reform.

The Pre-Existing Condition Insurance Plan (PCIP) is the temporary, federal high-risk pool created under the Affordable Care Act to provide coverage to uninsured individuals with preexisting conditions until 2014, when exchange coverage becomes avail­able to them. Nearly 78,000 people have enrolled since the program was implemented two years ago. This issue brief compares the PCIP with state-based high-risk pools that existed prior to the Affordable Care Act and considers programmatic differences that may have resulted in lower-than-anticipated enrollment and higher-than-anticipated costs for the PCIP. PCIP coverage, like state high-risk pool coverage, likely remains unaffordable to most lower-income individuals with preexisting conditions, but provides much needed access to care for those able to afford it. Operational costs of these programs are also quite high, making them less than optimal as a means of broader coverage expansion.

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.