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.

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.

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.

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.

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.

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.

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.

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.

Health Disparities Among Sexual and Gender Minorities with Autism Spectrum Disorder.

We explored the health and health care experiences of people with autism spectrum disorder (ASD) who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) using data from a national, internet-based survey of adults with disabilities supplemented by focused interviews. LGBTQ+ respondents had significantly higher rates of mental illness, poor physical health days per month, and smoking compared to straight, cisgender respondents with ASD. LGBTQ+ respondents also reported much higher rates of unmet health care need, inadequate insurance provider networks, and rates of being refused services by a medical provider. Examining the intersection of LGBTQ+ identity and ASD reveals compounded health disparities that insurers and medical providers are not adequately addressing, particularly as individuals transition to the adult medical system.

Perspectives of adults with disabilities on access to health care after the ACA: Qualitative findings.

BACKGROUND: Although health insurance gains are documented, little is known about personal experiences of adults with disabilities in accessing health care after coverage expansions of the Affordable Care Act (ACA) in 2014. OBJECTIVE/HYPOTHESIS: We interviewed 22 adults across the U.S. with a variety of disabilities and health insurance types to document remaining barriers to health care after ACA coverage expansions. METHODS: Telephone interviews were conducted from May to August 2017. Participants were recruited via disability-related organizations and were demographically and geographically diverse. Content analysis of interview transcripts was used to identify major themes related to accessing health care. RESULTS: Five major themes emerged: 1) information and understanding of coverage; 2) out-of-pocket costs; 3) prescription medications; 4) provider networks; and 5) transportation. Barriers in these areas led participants to delay or forgo health care and interfered with their ability to participate in paid employment. CONCLUSIONS: The ACA was intended to expand access to insurance coverage, not necessarily meet all health care related needs for people with disabilities. Many barriers remain to accessing needed care for this population, regardless of insurance status. Limited prescription coverage, limited provider networks and steep out-of-pocket costs may be addressed by policy makers at the state or national level. Similarly, having timely and accurate plan information is important in facilitating access to care and insurers should be aware that outdated information can result in missed care. Finally, transportation to appointments can be especially challenging for people with disabilities and insurers should consider options to address this issue.

Medicaid managed care: issues for enrollees with serious mental illness.

OBJECTIVES: To inform state Medicaid programs and managed care organizations, as well as to build their capacity to serve enrollees with complex needs related to serious mental illness (SMI). STUDY DESIGN: Quantitative and qualitative analyses of survey results from a sample of Medicaid enrollees with SMI in Kansas in 2016 and 2017 (N = 189). METHODS: Surveys were conducted by telephone or in person at community mental health centers. Analyses of descriptive statistics from closed-item responses and coded transcripts were used to identify major themes in open-item responses. RESULTS: Respondents reported high rates of comorbid physical and mental health conditions and current or past tobacco use. Most were unemployed, and some were homeless or living in unstable conditions. Participants indicated a need for better information and communication; improved access to prescriptions, dental care, reliable transportation, medical supplies, and equipment; and a wider physician/provider network. They wanted care coordinators to provide more frequent and responsive contact, better information about benefits and resources, and help navigating the system. CONCLUSIONS: Individuals with chronic and complex conditions can be challenging for managed care organizations to support, especially Medicaid enrollees with SMI, who experience high rates of comorbid physical health conditions and complex healthcare needs. To the extent that managed care organizations can help this population navigate their coverage and use more of the available benefits, barriers to care and unmet needs can be reduced or eliminated and outcomes subsequently improved.

Oral Health Needs and Experiences of Medicaid Enrollees With Serious Mental Illness.

INTRODUCTION: Chronic dental diseases are among the most prevalent chronic conditions in the U.S., despite being largely preventable. Individuals with mental illness experience multiple risk factors for poor oral health and need targeted intervention. This study investigated experiences of Kansas Medicaid enrollees with serious mental illness in accessing dental services, examined their oral health risk factors, and identified oral health needs and outcomes. METHODS: Survey data were collected from October 2016 through February 2017 from 186 individuals in Kansas with serious mental illness enrolled in Medicaid. Data were analyzed quantitatively (descriptive and bivariate statistics) and qualitatively (for major themes). RESULTS: Despite Medicaid coverage of dental cleanings, 60.2% of respondents had not seen a dentist in the last 12 months. Reasons included out-of-pocket costs, lack of perceived need, uncertainty about coverage, difficulty accessing providers, fear of the dentist, and transportation issues. High rates of comorbid physical health conditions, including diabetes and cardiovascular disease, and current or former tobacco use were also observed. CONCLUSIONS: Medicaid dental benefits that cover only dental cleanings and low levels of oral health knowledge create barriers to utilizing needed preventive dental care. Lack of perceived need for preventive dental services and lack of contact with dentists necessitates the development of targeted oral health promotion efforts that speak to the specific needs of this group and are disseminated in locations of frequent contact. The Medicaid population with serious mental illness would be an ideal group to target for the integration of chronic oral, physical, and mental health prevention services and control.

Impact of ACA Health Reforms for People With Mental Health Conditions.

OBJECTIVE: This brief report explores the impact of health reform for people with mental illness. METHODS: The Health Reform Monitoring Survey was used to examine health insurance, access to care, and employment for 1,550 people with mental health conditions pre- and postimplementation of the Affordable Care Act (ACA) and by state Medicaid expansion status. Multivariate logistic regressions with predictive margins were used. RESULTS: Post-ACA reforms, people with mental health conditions were less likely to be uninsured (5% versus 13%; t=-6.89, df=50, p<.001) and to report unmet need due to cost of mental health care (17% versus 21%; t=-3.16, df=50, p=.002) and any health services (46% versus 51%; t=-3.71, df=50, p<.001), and they were more likely to report a usual source of care (82% versus 76%; t=3.11, df=50, p=.002). These effects were experienced in both Medicaid expansion and nonexpansion states. CONCLUSIONS: Findings underscore the importance of ACA improvements in the quality of health insurance coverage.

Medicaid managed care: issues for beneficiaries with disabilities.

BACKGROUND: States are increasingly turning to managed care arrangements to control costs in their Medicaid programs. Historically, such arrangements have excluded people with disabilities who use long-term services and supports (LTSS) due to their complex needs. Now, however, some states are also moving this population to managed care. Little is known about the experiences of people with disabilities during and after this transition. OBJECTIVE: To document experiences of Medicaid enrollees with disabilities using long-term services and supports during transition to Medicaid managed care in Kansas. METHODS: During the spring of 2013, 105 Kansans with disabilities using Medicaid long-term services and supports (LTSS) were surveyed via telephone or in-person as they transitioned to managed care. Qualitative data analysis of survey responses was conducted to learn more about the issues encountered by people with disabilities under Medicaid managed care. RESULTS: Respondents encountered numerous disability-related difficulties, particularly with transportation, durable medical equipment, care coordination, communication, increased out of pocket costs, and access to care. CONCLUSIONS: As more states move people with disabilities to Medicaid managed care, it is critically important to address these identified issues for a population that often experiences substantial health disparities and a smaller margin of health. It is hoped that the early experiences reported here can inform policy-makers in other states as they contemplate and design similar programs.