Performance of the Washington Group questions in measuring blindness and deafness.

The Washington Group Short Set (WGSS) questions are intended to measure the severity of disability and disability status in US federal surveys. We used data from the 2010-2018 National Health Interview Survey to examine the performance of the WGSS visual disability and hearing disability questions in capturing blindness and deafness. We found that the WGSS questions failed to capture 35.7% of blind adults and 43.7% of deaf respondents as having a severe disability, or, per their recommended cut point, as being disabled. Coupled with evidence demonstrating the poor performance of the WGSS questions in estimating the size of the overall disability population, we contend that results from this study necessitate a halt in the use of the WGSS questions to measure disability in US federal surveys.

A year of disability health equity milestones: Why disability data is still needed.

Three milestone disability health equity related decisions occurred between September 2023 and May 2024. Though each is to be celebrated in its own right, the continued failure to collect and/or limitations with disability data block the path to achieving disability health equity in the US.

Disability inclusion in national surveys.

National surveys are important for understanding the disparities that disabled people experience across social determinants of health; however, limited research has examined the methods used to include disabled people in these surveys. This study reviewed nationally representative surveys administered by the Centers for Disease Control and Prevention (CDC) and the US Census Bureau that collected data in the past 5 years and sampled adults ≥18 years. Data from both publicly available online survey documents and a questionnaire emailed to survey administrators were used to determine whether surveys (1) oversampled disabled people, (2) had a data-accessibility protocol to support data collection, and (3) provided multiple data-collection modalities (eg, phone, paper). Of the 201 surveys identified, 30 met the inclusion criteria for the study. Of these 30 surveys, 1 oversampled disabled people, none had a data-collection accessibility protocol, and 21 provided multiple data-collection modalities. This study highlights barriers and opportunities to including disabled people in national surveys, which is essential for ensuring survey data are generalizable to the US population.

The role of perceived social support in subjective wellbeing among working-age U.S. adults with and without limitations in activities of daily living.

BACKGROUND: Perceived social support may enhance subjective wellbeing (SWB) for adults with activities of daily living (ADL) limitations. However, little is known about how social support may mediate (explain) and/or moderate SWB differences among U.S. working-age adults with versus without ADL limitations. OBJECTIVE: This study examines the role of perceived emotional and instrumental support in hedonic, eudaimonic, and evaluative wellbeing among adults with and without ADL limitations. METHODS: Data were from the 2021 National Wellbeing Survey - a national survey of U.S. working-age adults aged 18-64 (N = 3775). We used regression analyses to investigate differences in hedonic, eudaimonic, and evaluative wellbeing between individuals with versus without ADL limitations, as well as the roles of emotional and instrumental social support in explaining observed differences. We used interaction terms to examine whether social support moderated the observed associations. RESULTS: Adults with ADL limitations reported lower SWB than those without limitations across all three dimensions. Depending on the degree of limitations, the associations between ADL limitations and SWB decreased in magnitude or were no longer statistically significant after accounting for emotional and instrumental support. While both types of support were associated with better SWB among the three ADL groups, those with ADL limitations may benefit less from emotional support on both eudaimonic and evaluative wellbeing than those without limitations. CONCLUSIONS: Lower social support may contribute to worse SWB among adults with ADL limitations. Although this subpopulation may benefit from high social support, improving their SWB may require systemic interventions beyond simply enhancing social support.

Disability Mortality Disparity: Risk Of Mortality For Disabled Adults Nearly Twice That For Nondisabled Adults, 2008-19.

After years of advocacy by the disability community and allied organizations, on September 26, 2023, the National Institute on Minority Health and Health Disparities (NIMHD) designated disabled people as a health disparities population in the US. During its deliberations, the NIMHD emphasized that there was not sufficient empirical evidence on health disparities between disabled and nondisabled adults. My study addressed this gap by examining 2008-19 data from the National Health Interview Survey Linked Mortality Files on people ages eighteen and older to identify, categorize, and quantify disparities in mortality risk among disabled and nondisabled adults. The risk of mortality during the study period was 1.9 times higher overall for disabled compared with nondisabled adults. The risk increased with the number of reported disabilities and varied by disability category. These findings underscore the need to improve access to high-quality, evidence-based health care among disabled people. To gain a full understanding of the scope of disparity and the interventions needed to mitigate it, it is critical to develop more equitable and inclusive measures of disability and ableism for use in population health surveys.

Covid-19 patterns among adults with intellectual and developmental disability and the general population in New York state during the first year of the pandemic.

BACKGROUND: People with intellectual and developmental disabilities (IDD) in the US, especially those living in group homes, experienced comparatively higher Covid-19 case/case fatality rates than the general population during the first year of the pandemic. There is no information about the patterns of case/case fatality rates during this time. OBJECTIVE: This study compared Covid-19 case/case fatality rates among people with IDD living in residential group homes to the general population across the first year of the pandemic in New York State (NYS). METHODS: Covid-19 positive cases and deaths collected from New York Disability Advocates (NYDA), a coalition of organizations serving individuals with IDD, was compared to data for the NYS general population from the first pandemic year. Case rates/100,000 and case fatality rates were calculated for the study period. Joinpoint Trend Analysis Software was used to analyze patterns in weekly case/case fatality rates. RESULTS: Case fatality rates for people with IDD were higher than for the overall state population throughout the pandemic's first year. Case rates were higher among people with IDD across most of this year. Although the patterns in rates were similar, there was a sharp increase in cases for those with IDD during Fall 2020 beginning eight weeks before the general NYS population and a significant decrease in fatalities in late December 2020 into January 2021. CONCLUSIONS: Consistently higher case fatality rates and significant differences in case/case fatality rates for people with IDD living in group homes require further consideration. Planning for future emergencies will require an enhanced federal/state understanding of the needs of people with IDD and a responsive surveillance system.

Educational Attainment and Perceived Need for Future ADL Assistance.

The current study examined whether educational attainment was associated with perceived need of assistance with future activities of daily living (ADL) among middle-aged and early older-aged adults in the United States. Data for 54,946 adults aged 40-65 years from the 2011-2014 National Health Interview Survey (NHIS) were analyzed using ordered logistic regression. Adults with more education will on average need less ADL assistance than adults with less education. Paradoxically, this study found that higher levels of formal education were associated with perceiving more need for future ADL assistance. This association was also found to vary between males and females. Building knowledge of long-term care planning into existing public educational structures and providing this knowledge to adults no longer involved in the formal educational system through medical providers may lead to better anticipation of future care needs.

Health equity for people with intellectual and developmental disability requires vast improvements to data collection: Lessons from the COVID-19 pandemic.

The COVID-19 pandemic drastically underscored the lack of proper health surveillance for people with intellectual and developmental disability (IDD) in the USA. This data equity failure resulted in researchers having to rely on nontraditional data sources to develop an understanding of how this population was faring during the pandemic. To begin addressing this data equity concern, in this commentary, we (1) discuss the difficulties in accessing data during the pandemic specifically related to people with IDD; (2) provide guidance regarding how existing data can be used to examine COVID-19 outcomes for people with IDD; and (3) provide recommendations for improving data collection for people with IDD in light of lessons learned during the pandemic. In sum, the data currently available to examine COVID-19 as well as other health outcomes among people with IDD are severely limited, compromising the ability to both understand and address health disparities among this population.

Counting disability in the National Health Interview Survey and its consequence: Comparing the American Community Survey to the Washington Group disability measures.

BACKGROUND: The objective of the National Health Interview Survey (NHIS) is to provide data that can be used to monitor the health of the US population. OBJECTIVE: In this study, we evaluate whether the disability questions currently used in the NHIS - the Washington Group questions - threaten the ability of this survey to fulfil its stated objective for disabled people. METHODS: Data were from the 2011-2012 NHIS with linkage to mortality status through 2019. We examined whether people who reported a disability in the American Community Survey disability questions had their disability counted in the Washington Group questions. We then examined the consequence of use of the Washington Group as opposed to the American Community Survey questions, on estimates of disability prevalence and comparative mortality risk. RESULTS: We find that when compared to their predecessor, the American Community Survey disability questions, the Washington Group questions accounted for less than half of disabled people, primarily counting disabled people with more than one disability status, but not counting many disabled people with only one disability status. As a result of this undercount, disability prevalence rates based on the Washington Group questions underestimate the size of the disabled population in the US, and overestimate the comparatively higher mortality risk associated with disability status. CONCLUSIONS: These results underscore the need to re-evaluate the disability questions used in the NHIS, and invest in the development of improved and expanded disability questionnaires for use in national surveys.

Age differences in long-term mortality among male nonveterans, noncombat veterans, and combat veterans.

Research documenting differences in mortality risk across the life course between veterans and nonveterans has not accounted for combat status. To address this gap in the literature, the current study examined differences in long-term mortality among midlife and older-adult male nonveterans, noncombat veterans, and combat veterans. Data were drawn from Wave 2 (2004/2005) of the Midlife Development in the United States survey and linked to 2020 mortality data (N = 2,024). Based on interpretation of a veteran-combat status by age interaction term, compared to nonveterans, noncombat veterans experienced a mortality advantage at younger ages, ORmain effect = 0.12, 95% CI [0.03, 0.54], p = .006, and a mortality disadvantage at older ages, ORinteraction term = 1.06, 95% CI [1.01, 1.05], p = .004, with the crossover occurring at 73.4 years. A similar pattern was present among combat veterans, with the mortality advantage at younger ages not reaching significance, ORmain effect = 0.16; 95% CI [0.02, 1.18], p = .072; a mortality advantage at older ages, ORinteraction term = 1.03, 95% CI [1.00, 1.05], p = .040; and the crossover occurring 4.2 years earlier at 69.2 years. The findings suggest that combat status may accelerate the age-related mortality disadvantage among veterans. Studies of health and mortality outcomes among veterans should, therefore, account for combat status. When data allow, future studies should confirm whether this pattern is present in nationally representative samples.

Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.

BACKGROUND: Death certificates are crucial for understanding population health trends including the burden of disease mortality. Accurate reporting of causes of death on these records is necessary in order to implement adequate public health policies and fund disease research. While there is evidence that Alzheimer disease and unspecified dementia are prevalent among people with Down syndrome, a 2014 Centers for Disease Control and Prevention (CDC) rule change instructing that Down syndrome should be reported as the underlying cause of death in instances when death occurred from Alzheimer disease or unspecified dementia threatens the accuracy and the utility of death certificates for this population. METHODS: This study used 15 years (2005-2019) of US death certificate data for adults with and without Down syndrome. We compare the mortality burden due to Alzheimer disease and unspecified dementia prior to and after amending death certificates that report Down syndrome as the underlying cause of death. RESULTS: When analyzing death certificates without addressing the reporting of Down syndrome as the underlying cause of death, rates of death due to Alzheimer disease and dementia ranked as the third leading cause of death for both adults with and without Down syndrome. After amending death certificates that reported Down syndrome as the underlying cause of death, Alzheimer disease and dementia were the leading cause of death among those with Down syndrome, occurring 2.7 times more in adults with compared to without Down syndrome. CONCLUSION: The findings of this study highlight the importance of accurate mortality data for studying and addressing population health trends. The current practice of reporting Down syndrome as the underlying cause of death rather than the disease responsible for death needs to be reconsidered and modified. If not, people with Down syndrome may be further marginalized within dementia related support and research.

Risk Factors Explaining Military Deaths From Suicide, 2008-2017:A Latent Class Analysis.

Military suicide prevention efforts would benefit from population-based research documenting patterns in risk factors among service members who die from suicide. We use latent class analysis to analyze patterns in identified risk factors among the population of 2660 active-duty military service members that the Department of Defense Suicide Event Report (DoDSER) system indicates died by suicide between 2008 and 2017. The largest of five empirically derived latent classes was primarily characterized by the dissolution of an intimate relationship in the past year. Relationship dissolution was common in the other four latent classes, but those classes were also characterized by job, administrative, or legal problems, or mental health factors. Distinct demographic and military-status differences were apparent across the latent classes. Results point to the need to increase awareness among mental health service providers and others that suicide among military service members often involves a constellation of potentially interrelated risk factors.

COVID-19 mortality burden and comorbidity patterns among decedents with and without intellectual and developmental disability in the US.

BACKGROUND: While there is ample evidence of increased COVID-19 mortality risk among people with intellectual and developmental disability (IDD), research has not documented whether this higher risk resulted in increased COVID-19 mortality burden in the US or whether comorbidity patterns among COVID-19 deaths are similar or distinct for people with IDD. OBJECTIVE: To determine the differences in COVID-19 mortality burden between decedents with and without IDD during the first year of the pandemic. METHODS: This study uses 2020 US death certificate data to compare COVID-19 mortality burden and comorbidity patterns among decedents with and without IDD. RESULTS: COVID-19 was the leading cause of death among decedents with IDD in 2020, compared with the 3rd leading cause among decedents without IDD. The proportion of deaths from COVID-19 was also higher for decedents with compared to without IDD. Comorbidities resulting from COVID-19 were similar among decedents with and without IDD, but there were some differences among reported pre-existing conditions, notably higher rates of hypothyroidism and seizures among decedents with IDD. CONCLUSION: The COVID-19 mortality burden was greater for people with than without IDD during the first year of the pandemic. The continued practice of postmortem diagnostic overshadowing prevents analyzing whether this difference continues through today. Action is needed by the Centers for Disease Control and Prevention to mitigate this data inequity. Out of an abundance of caution, medical providers should carefully monitor symptoms among COVID-19 patients with IDD diagnosed with hypothyroidism and/or seizures.

Postmortem Diagnostic Overshadowing: Reporting Cerebral Palsy on Death Certificates.

Postmortem diagnostic overshadowing-defined as inaccurately reporting a disability as the underlying cause of death-occurs for over half of adults with cerebral palsy. This practice obscures cause of death trends, reducing the effectiveness of efforts to reduce premature mortality among this marginalized health population. Using data from the National Vital Statistics System 2005 to 2017 U.S. Multiple Cause of Death files (N = 29,996), we identify factors (sociodemographic characteristics, aspects of the context and processing of death, and comorbidities) associated with the inaccurate reporting of cerebral palsy as the underlying cause of death. Results suggest that inaccurate reporting is associated with heightened contexts of clinical uncertainty, the false equivalence of disability and health, and potential racial-ethnic bias. Ending postmortem diagnostic overshadowing will require training on disability and health for those certifying death certificates and efforts to redress ableist death certification policies.

Racial-ethnic inequities in age at death among adults with/without intellectual and developmental disability in the United States.

To identify potential differences in racial-ethnic inequities in mortality between adults with/without intellectual and developmental disability, we compared patterns in age at death by race-ethnic status among adults who did/did not have intellectual and developmental disability reported on their death certificate in the United States. Data were from the 2005-2017 U.S. Multiple Cause-of-Death Mortality files. Average age at death by racial-ethnic status was compared between adults, age 18 and older, with/without different types of intellectual and developmental disability reported on their death certificate (N = 32,760,741). A multiple descent pattern was observed among adults without intellectual or developmental disability, with age at death highest among Whites, followed by Asians, Hispanics and Blacks, then American Indians. In contrast, a bifurcated pattern was observed among adults with intellectual disability, with age at death highest among Whites, but lower and similar among all racial-ethnic minority groups. The severity of racial-ethnic inequities in age at death was most pronounced among adults with cerebral palsy. Policy makers and public health experts should be aware that racial-ethnic inequities are different for adults with intellectual and developmental disability - all minorities with intellectual and developmental disability are at greater risk of premature death than their White counterparts.

Attention deficit hyperactivity disorder and the age pattern of adult mortality.

We draw upon the life-course perspective and examine whether Attention Deficit Hyperactivity Disorder (ADHD) moderates the age pattern of adult mortality using data from the 2007 and 2012 National Health Interview Survey Sample Adult File linked to National Death Index data through 2015. Overall, 7.0% of respondents died by 2015. Discrete-time hazard analysis indicates that the log odds of mortality were significantly lower among 18 and 19 year old adults ever diagnosed with ADHD and significantly higher among 46 to 64 year old adults ever diagnosed with ADHD, with a crossover occurring at age 33. Results were similar among men and women. It is not known specifically which risks drive changes in the risk of mortality documented among persons with ADHD during the transition to adulthood, the increased risk of mortality in midlife, or whether some risks operate more or less at particular ages. Additional research can lead to targeted, age- and life-course stage-focused interventions for specific risks and contribute to the reduction of ADHD-related mortality.

Expanding Understanding of Racial-Ethnic Differences in ADHD Prevalence Rates among Children to Include Asians and Alaskan Natives/American Indians.

BACKGROUND: Prior studies show that ADHD prevalence rates vary by race-ethnicity, but these studies do not include a full range of racial-ethnic minority groups. OBJECTIVE: This study aimed to understand differences in ADHD prevalence among children across a wider range of racial-ethnic groups, overall and stratified by biological sex. METHOD: Data on children aged 5 to 17 from the 2004 to 2018 National Health Interview Survey Sample Child Files were used in analyses (N = 120,129). RESULTS: Compared to Non-Hispanic White children, ADHD prevalence was lower among Hispanic and Non-Hispanic Asian children. This difference was present for both males and females. Across all racial-ethnic groups, males had higher ADHD prevalence than females. CONCLUSION: Results from this study provide further evidence that racial-ethnic disparities in ADHD prevalence rates persist across sex and provide initial evidence of substantially lower ADHD prevalence among Non-Hispanic Asians. Implications, limitations, and future research directions derived from the results are discussed.

Cause of death trends among adults with and without cerebral palsy in the United States, 2013-2017.

BACKGROUND: Adults with cerebral palsy (CP) in the United States die much earlier than those without CP, a health inequality likely shaped by causes of death. Existing research has not considered demographic differences in mortality patterns. OBJECTIVES: To analyze differences in cause of death for adults who did/did not have CP reported on their death certificates and to assess sex and racial-ethnic difference in causes of death among adult decedents with CP. METHODS: Data are from the 2013-2017 US Multiple Cause of Death Mortality files (N = 13,332,871; n = 13,897 with CP). Multiple logistic regression models were used to compare differences in causes of death between adults with and without CP and to determine sex and racial-ethnic differences in causes of death among adults with CP. Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were estimated. RESULTS: As compared with decedents without CP, those with CP were more likely to die from pneumonitis (aOR 31.14, 95% CI 29.42-32.96), influenza/pneumonia (8.78, 8.30-9.29), respiratory failure (17.24, 15.19-18.69), and choking (20.66, 18.86-22.62) and less likely to die from heart disease (0.61, 0.58-0.65), cancer (0.12, 0.11-0.13), chronic lower respiratory diseases (0.50, 0.44-0.56), and cerebrovascular diseases (0.66, 0.59-0.75). Among adults with CP, female decedents were more likely than males to die from respiratory failure (1.21, 1.03-1.42), and non-Hispanic Black decedents were more likely than non-Hispanic White decedents to die from heart disease (1.24, 1.07-1.45) and cerebrovascular disease (1.77, 1.29-2.49). CONCLUSIONS: In 2013-2017, heart disease was the leading cause of death for adults with and without CP. However, for people with compared to those without CP, likelihood of death from likely preventable respiratory causes of death was higher. Non-Hispanic Black adults were more likely than non-Hispanic White adults to die from heart and cerebrovascular diseases. Public health, clinical, and rehabilitation efforts must use a multifaceted approach to address respiratory and circulatory health among people with CP. DATABASE: United States National Vital Statistics System of the Centers for Disease Control and Prevention Multiple Cause of Death Mortality files (National Bureau of Economic Research: https://www.nber.org/research/data/vital-statistics-mortality-data-nber).

Age differences in allostatic load among veterans: The importance of combat exposure.

The current study examinedage differences in allostatic load among nonveterans, noncombat veterans, and combat veterans. Participants included 280 individuals from the Midlife Development in the United States (MIDUS) survey, including 164 veterans (n = 48 combat veterans; n = 116 noncombat veterans) and 116 nonveterans. Age differences in allostatic load were similar among nonveterans and noncombat veterans, B = 0.002, SE = .011, p = .878, with older adults showing higher levels of allostatic load than their comparatively younger counterparts. Among combat veterans, however, a different pattern emerged. In this group, levels of allostatic load were similar across age, seemingly due to higher levels of allostatic load among younger combat veterans, B = -0.029, SE = .014, p = .031, ƞp 2  =  .022. Results reveal the importance of considering combat exposure when examining health outcomes of military veterans, particularly in the context of age.

Risk Factors Associated With COVID-19 Outcomes Among People With Intellectual and Developmental Disabilities Receiving Residential Services.

Importance: Although there is evidence of more severe COVID-19 outcomes, there is no information describing the risk factors for COVID-19 diagnosis and/or mortality among people with intellectual and developmental disabilities (IDD) receiving residential support services in the US. Objective: To identify associations between demographic characteristics, residential characteristics, and/or preexisting health conditions and COVID-19 diagnosis and mortality for people with IDD receiving residential support services. Design, Setting, and Participants: This cohort study tracked COVID-19 outcomes for 543 individuals with IDD. Participants were receiving support services from a single organization providing residential services in the 5 boroughs of New York City from March 1 to October 1, 2020. Statistical analysis was performed from December 2020 to February 2021. Exposures: Resident-level characteristics, including age, sex, race/ethnicity, disability status, residential characteristics, and preexisting medical conditions. Main Outcomes and Measures: COVID-19 diagnosis was confirmed by laboratory test. COVID-19 mortality indicated that the individual died from COVID-19 during the course of the study. Logistic regression models were used to evaluate associations between demographic characteristics, residential characteristics, and preexisting health conditions and COVID-19 diagnosis and mortality. Results: Among the 543 individuals with IDD in the study, the median (interquartile range) age was 57.0 (45-65) years; 217 (40.0%) were female, and 274 (50.5%) were Black, Asian/Pacific Islander, American Indian or Alaskan Native, or Hispanic. The case rate was 16 759 (95% CI, 13 853-20 131) per 100 000; the mortality rate was 6446 (95% CI, 4671-8832) per 100 000; and the case-fatality rate was 38.5% (95% CI, 29.1%-48.7%). Increased age (odds ratio [OR], 1.04; 95% CI, 1.02-1.06), Down syndrome (OR, 2.91; 95% CI, 1.49-5.69), an increased number of residents (OR, 1.07; 95% CI, 1.00-1.14), and chronic kidney disease (OR, 4.17; 95% CI, 1.90-9.15) were associated with COVID-19 diagnosis. Heart disease (OR, 10.60; 95% CI, 2.68-41.90) was associated with COVID-19 mortality. Conclusions and Relevance: This study found that, similar to the general population, increased age and preexisting health conditions were associated with COVID-19 outcomes for people with IDD receiving residential support services in New York City. As with older adults living in nursing homes, number of residents was also associated with more severe COVID-19 outcomes. Unique to people with IDD was an increased risk of COVID-19 diagnosis for people with Down syndrome.