The Treatment of Disability under Crisis Standards of Care: An Empirical and Normative Analysis of Change over Time during COVID-19.

CONTEXT: COVID-19 has prompted debates between bioethicists and disability activists about Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care. METHODS: We examine CSCs in 35 states and code how they approach disability, comparing states that have revised their plans over time to those that have not. We offer ethical and legal analyses evaluating to what extent changes to state policy aligned with disability rights law and ethics during the early pandemic and subsequently as stakeholder engagement grew. FINDINGS: While disability rights views were not well represented in CSCs that were not updated or updated early in the pandemic, states that revised their plans later in the pandemic were more aligned with advocate priorities. However, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice. CONCLUSIONS: The disability rights movement's successes in influencing state triage policy should inform future CSCs and set the stage for further work on how stakeholders influence bioethics policy debates. We offer thoughts for examining bioethics policy making reflecting the processes by which activists seek policy change and the tension policy makers face between expert delegation and mediating values conflicts.

Tracking long-term services and supports rebalancing through workforce data.

OBJECTIVE: To understand trends in the long-term services and supports (LTSS) workforce and assess workforce data as a measure of progress in shifting LTSS resources from institutional to community-based settings. DATA SOURCES/STUDY SETTING: Workforce data from the American Community Survey from 2008 to 2022. STUDY DESIGN: Measures of LTSS rebalancing and institutional and community workforce supply per 1000 persons with LTSS needs were constructed. After showing national trends over the study period, state fixed effects regressions were used to evaluate the within-state relationship of these measures with existing measures of LTSS utilization. Workforce supply measures were compared to the percentage of state Medicaid LTSS spending spent in the community to assess their utility for across state comparisons. Each state's progress in LTSS rebalancing over the study period was then shown using workforce data. DATA COLLECTION/EXTRACTION METHODS: A sample of 336,316 LTSS workers and 3,015,284 people with LTSS needs over the study period was derived from American Community Survey data. PRINCIPAL FINDINGS: From 2008 to 2022, the percentage of the LTSS workforce employed in the community rose from 44% to 58%. Thirty states saw more than a 10 percentage point increase. From 2008 to 2013, the size of the community workforce expanded dramatically but has since stagnated. In contrast, the institutional workforce entered a long-term decline beginning in 2015 that accelerated during the COVID-19 pandemic. State fixed effects regressions showed that measures of workforce supply have a strong relationship with LTSS utilization measures for older adults, but not for younger people with disabilities. CONCLUSIONS: Workforce data can serve as an effective measure of changes in LTSS utilization for older adults. This offers researchers and policymakers a useful alternative to administrative claims, bypassing threats to comparability from coding changes and the shift to managed care. Additional data is needed on workforce trends in services for younger LTSS consumers.

How Should We Address Warehousing Persons With Serious Mental Illness in Nursing Homes?

Despite long-standing efforts to keep patients with serious mental illness (SMI) out of nursing homes, many persons with schizophrenia, bipolar disorder, or psychoses become long-stay nursing home residents. This article discusses why this trend is inappropriate clinically and ethically and suggests how to reform federal review requirements to accomplish 2 goals: to better identify people with SMI at risk of nursing home placement and to support them to live in the community.

How has COVID-19 impacted disability employment?

BACKGROUND: While the COVID-19 public health emergency has had disastrous health impacts for people with disabilities, it remains unclear what impact the associated economic recession and subsequent recovery have had on disability employment. OBJECTIVE: We evaluated employment trends for people with and without disabilities over the course of the COVID-19 recession and subsequent economic recovery, both overall and by occupational category (essential, non-essential, teleworkable, non-teleworkable, frontline, non-frontline). METHODS: We made use of data from the nationally representative Current Population Survey. Linear probability models were used to estimate percent changes in employment-to-population ratios and identify differences between disabled and non-disabled employment in each quarter broadly and within specific occupational categories. RESULTS: As the COVID-19 recession began in Q2 2020, people with disabilities experienced employment losses that were proportionately similar to those experienced by people without disabilities. However, during the subsequent economic recovery, the employment rate of people with disabilities grew more quickly in Q4 2021 through Q2 2022, driven by increased labor force participation. These employment gains have been concentrated in teleworkable, essential, and non-frontline occupations. CONCLUSION: Our findings suggest that people with disabilities are disproportionately benefiting from the rapid recovery from the initial economic contraction at the start of the pandemic.

A Passing Problem: Evaluating Harm and Benefit in Autism Research.

Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to "pass" as nonautistic. A growing body of evidence highlights serious potential harms from passing demands. We discuss why it is important for institutional review boards (IRBs) to scrutinize autism research for clinical passing demands, and we document the existence of such demands in outcome measures commonly employed in autism research. We propose an ethical framework for IRBs and others to make use of in evaluating the ethical appropriateness of particular treatment goals in autism intervention or intervention-adjacent research, emphasizing that treatment goals should be in pursuit of a beneficial nonpassing purpose and be the least burdensome means of accomplishing such a purpose. We also highlight potential promising practices for IRBs, investigators, and other stakeholders seeking to address these issues in autism research.

Nursing Home Residents Younger Than Age Sixty-Five Are Unique And Would Benefit From Targeted Policy Making.

Existing public policies often fail to acknowledge differences between older (ages sixty-five and older) and younger (younger than age sixty-five) people with disabilities residing in nursing homes. We compared long-stay (over sixty days) residents across age groups and then documented state-level variation in their age-adjusted prevalence in 2019 and trends in prevalence during the period 2013-19. Compared with older residents, younger residents tended to have different diagnoses and were more likely to reside in for-profit and lower-quality facilities, as well as to be non-White and male. Among younger people with disabilities, nursing home use varied widely across states, and trends in use were only weakly correlated with trends for older adults. Although rates of state-level nursing home placement among older adults generally declined, in many states they stagnated or grew among those younger than age sixty-five, with no convergence of trends in placement across states. Our findings suggest the value of approaching younger people with disabilities as a distinct population. We offer targeted policies to divert these people from nursing homes to home and community-based settings.

Identifying And Exploring Bias In Public Opinion On Scarce Resource Allocation During The COVID-19 Pandemic.

The COVID-19 pandemic offers an opportunity to examine public opinion regarding the allocation of scarce medical resources. In this conjoint experiment on a nationally representative sample of US adults, we examined how a range of patient characteristics affect respondents' willingness to allocate a ventilator between two patients with equal likelihood of short-term survival and how this differs by respondents' attributes. Respondents were 5.5 percentage points less likely to allocate a ventilator to a patient with a disability than to a nondisabled patient. Disability bias was correlated with older age cohorts and higher education levels of respondents. Liberal and moderate respondents were more likely to give a ventilator to Black and Asian patients than to White patients. Conservatives were much less likely to allocate a ventilator to transgender patients than to cisgender patients. These findings demonstrate the importance of bias mitigation and civil rights enforcement in health policy making, especially under conditions of scarcity.

Infectious Diseases-Related Emergency Department Visits Among Non-Elderly Adults with Intellectual and Developmental Disabilities in the United States: Results from the National Emergency Department Sample, 2016.

Emerging evidence on the disproportionate impact of COVID-19 on people with intellectual and developmental disabilities (IDD) points to the underlying risk and burden of infectious diseases (IDs) in this population. The objective of this study was to examine the risk of ID-related emergency department (ED) visits, subsequent hospitalizations, and hospital-based mortality during ID-related visits among adults with IDD compared to those without IDD. The authors conducted a retrospective study using data from the 2016 Nationwide Emergency Department Sample. The sample included 94,928 adults with IDD identified using ICD-10-CM codes, and age- and sex-matched 284,763 non-IDD adults in a 1:3 case-control ratio. A Poisson regression model was used to compare the risk of ID-related ED visits, subsequent hospitalizations, and hospital-based mortality during ID-related visits between adults with and without IDD. Covariates included sociodemographic and hospital characteristics. Results showed that adults with IDD are at a higher risk for ID-related ED visits, subsequent hospitalization, and mortality during ID-related ED visits compared to non-IDD adults. Adults with IDD continued to experience higher risks even after accounting for sociodemographic, hospital, and clinical characteristics. Septicemia and respiratory tract infections are the leading causes of ED visits, hospitalization, and mortality. This study found substantial disparities in ID-related ED visits, subsequent hospitalization, and mortality among the burdens for adults with IDD. These observations underscore the importance of integrated strategies to reduce ID-related morbidity among adults with IDD.

Excluding People With Disabilities From Clinical Research: Eligibility Criteria Lack Clarity And Justification.

The exclusion of people with disabilities from clinical research without appropriate justification is discriminatory, is counter to federal regulations and research guidelines, and limits study generalizability. This matter is understudied, and data on the disability status of trial participants are rarely collected or reported. We analyzed ninety-seven recent interventional protocols in four therapeutic areas registered on ClinicalTrials.gov. Eighty-five percent of protocols allowed broad investigator discretion to determine eligibility, whereas only 18 percent explicitly permitted people with disabilities to use forms of support (such as supported decision making or assistive devices) to facilitate study participation. Eligibility criteria affecting people with disabilities included exclusions for psychiatric (68 percent), substance use (62 percent), HIV or hepatitis (53 percent), cognitive or intellectual (42 percent), visual (34 percent), hearing (10 percent), mobility (9 percent), long-term care (6 percent), and speech and communication (3 percent) disability-related domains. Documented justification was provided for only 24 percent of these exclusions. We recommend greater scrutiny of study eligibility criteria, scientific or ethical justification of exclusions, and accessible study design.

The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

When Disability Is Defined by Behavior, Outcome Measures Should Not Promote "Passing".

When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or elimination of diagnostic traits, implicitly defining typical appearance as the goal of service provision. Such an approach often interferes with more meaningful, person-centered goals; causes harm to people with disabilities; and is unnecessary for dealing with traits that are intrinsically harmful or personally distressing, such as self-injury. Disability stakeholders should reevaluate outcome measures that seek to eliminate disability-related traits that are stigmatized but not harmful. Using autism and the emergent neurodiversity movement as a case study, this article explores ethical challenges in selecting outcome measures in behaviorally defined disability diagnoses.