In the United States, 26 percent of adults and two in five adults over 65 years old have at least one disability, and these numbers are increasing. The October 2022 edition of Health Affairs is the journal’s first issue devoted entirely to disability and health.
As noted by Monika Mitra and colleagues in their overview article, disability and health are distinct concepts, and disability is not synonymous with poor health. Some disabling conditions inevitably lead to poorer health, regardless of individual circumstances. In other instances, poorer health among people with disabilities stems from economic and social inequities, such as barriers to health care access.
In their overview paper, Lisa Iezzoni and coauthors wrote about how disparities in access and outcomes for Americans with disabilities are discouraging, given the nearly half-century of civil rights laws intended to achieve equity for disabled people. Section 504 of the Rehabilitation Act of 1973, the 1990 Americans with Disabilities Act (ADA) and 2008 ADA Amendments Act (ADAAA), and Section 1557 of the 2010 Patient Protection and Affordable Care Act (ACA) are all meant to advance equity for people with disabilities; however, disabled Americans continue to experience disparities and inadequate services across the health care continuum, from preventive care to home- and community-based services.
Intersectional Identities Among Specific Populations
Disability status is only one of many identities an individual has, and it does not act independently in shaping people’s health opportunities and outcomes. Other identities include race and ethnicity, gender and sex, and sexual orientation, among others. These different identities combine in complex ways, including how a person is perceived by society, to influence health opportunities. This concept—the interconnected nature of one’s many identities and how those combinations are perceived by others—is often discussed in terms of intersectionality.
Several papers in the theme issue present evidence of disparities among people with disabilities that intersect with other marginalized identities.
Higher Rates Of Disability Among Transgender Adults
Madeline Smith-Johnson and coauthors found that after controlling for confounders, “transgender adults have a 27 percent chance of having at least one disability at age twenty and a 39 percent chance at age fifty-five”—nearly twice the rate of their cisgender counterparts at both ages (Exhibit 1). Given evidence that having a disability and identifying as transgender are both separately associated with increased risk for poor health outcomes, Smith-Johnson’s findings are an example of how identities can combine to further increase health risks.
Exhibit 1. Adjusted probability of reporting at least one disability among US adults, by age and gender, 2014–20.
Source: “Transgender Adults Have Higher Rates Of Disability Than Their Cisgender Counterparts,” Madeline Smith-Johnson, exhibit 4 (author’s analysis of data from the Behavioral Risk Factor Surveillance System, 2014–20).
The Links Between Disability, Incarceration, And Social Exclusion
Laurin Elizabeth Bixby and coauthors report that disabled people are disproportionately represented in US prisons and jails. While about 26 percent of the adult population is disabled, people with disabilities comprise about 66 percent of the state and federal prison population. The study found disparities at the intersection of disability, race-ethnicity, and gender. Across all racial-ethnic groups, more women are disabled than men, with the largest gender disparities observed among Black and Hispanic individuals (Exhibit 2).
Exhibit 2: Disparities in disability status among people incarcerated in state or federal prisons in the US, by race, ethnicity, and sex, 2016.
Source: “The Links Between Disability, Incarceration, And Social Exclusion,” Laurin Bixby and coauthors, exhibit 2 (authors’ analysis of data from the Bureau of Justice Statistics, Survey of Prison Inmates, 2016.
Compared to nondisabled incarcerated people, disabled incarcerated people were more likely to have previously resided in other institutions, including punitive institutions such as jails and juvenile detention facilities, as well as therapeutic institutions such as hospitals and residential treatment facilities (Exhibit 3).
Exhibit 3. Previous residence in other institutions before current incarceration among people incarcerated in state or federal prisons in the US, by disability status, 2016.
Source: “The Links Between Disability, Incarceration, And Social Exclusion,” Laurin Bixby and coauthors, exhibit 3 (authors’ analysis of data from the Bureau of Justice Statistics, Survey of Prison Inmates, 2016).
Challenges Accessing Care
Multiple dimensions of care delivery affect people with disabilities. In their overview article, Iezzoni and coauthors highlight challenges that disabled people face when communicating with clinicians, physically accessing care, affording and receiving home and community-based supports, and covering costs of care.
Disrupted Care For Adults With Disabilities During COVID-19
Ilhom Akobirshoev and coauthors report significant disparities in access to medical care during the first year of the COVID-19 pandemic. In the second half of 2020, adults with disabilities, including in every disability category, were more likely than those without disabilities to report that they had delayed medical care, did not get needed care for something other than the coronavirus, and did not get needed care at home from a nurse or other health professional due to the pandemic (Exhibit 4).
Exhibit 4. Prevalence and Prevalence Ratios for Delayed Medical Care and Unmet Care Needs due to the COVID-19 Pandemic Among Adults By Presence of Disability, 2020.
Source: “Delayed Medical Care And Unmet Care Needs Due To The COVID-19 Pandemic Among Adults With Disabilities In The US,” Ilhom Akobirshoev and coauthors, exhibit 2 (adapted) (National Health Interview Survey, 2020).
The American Rescue Plan Act, passed in March of 2021, sought to address some of these problems with a 10 percent increase in federal Medicaid matching funds for Home and Community-Based Care Services through March 2022 and additional support for behavioral health services. However, Akobirshoev and coauthors’ findings demonstrate the significant gaps in unmet needs between people with and without disabilities that policy changes would need to overcome to adequately support people with disabilities in times of public health crises.
Access Personal Care Aides
Personal care aides play a major role in assisting people with disability with their everyday activities. When examining geographic differences in disability and the supply of personal care aides (PCAs) across the US, Susan Chapman and colleagues identified southern states as the region with the greatest gap between potential need for and availability of PCAs (Exhibit 5).
Exhibit 5. Supply of personal care aides per 1,000 adults with self-care disability, by US geographic subdivision, 2013–17.
Source: “Personal Care Aides: Assessing Self-Care Needs And Worker Shortages In Rural Areas,” Susan Chapman and coauthors, exhibit 4 (American Community Survey, 5-Year Public Use Microdata Sample, 2013–17).
Within states, there were fewer personal care aides per 1,000 adults with self-care disabilities in areas classified as “more rural” and “most rural” than in the least rural areas (not shown).
Access to care is a persistent problem documented in rural areas. In an overview paper from the December 2019 Health Affairs theme issue on rural health, Janice Probst and colleagues’ attributed the health disparities endured by rural populations—including poorer health and higher age-adjusted mortality—“in part, to declining health care provider availability and accessibility in rural communities.” People with disabilities may face discrimination when attempting to access care, which can intersect with additional causes of rural health disparities and lead to significantly worse health outcomes.
Communication Access for Deaf and Hard-of-Hearing Patients
Tyler James and colleagues studied access to care for deaf and hard-of-hearing (DHH) American Sign Language (ASL) users at mental health and substance use disorder treatment facilities. They found 41 percent of mental health facilities and 59 percent of substance use treatment facilities reported not providing services in sign language and were thus non-compliant with the Affordable Care Act’s mandate to provide accessible communication to DHH patients.
Exhibit 6 displays the state-level prevalence of non-compliance with the requirement to provide sign language interpreters among covered mental health facilities. Seventeen states had 50 percent or more of mental health facilities in non-compliance with the requirement to provide sign language interpreters. South Carolina had the lowest prevalence of facilities in non-compliance (16 percent), while Wyoming had the highest prevalence (64 percent).
Exhibit 6. Prevalence of mental health facilities in the US that are covered entities under Section 1557 of the Affordable Care Act but do not provide services in sign language to Deaf and hard-of-hearing patients, 2019.
Source: “Communication Access In Mental Health And Substance Use Treatment Facilities For Deaf American Sign Language Users,” Tyler G. James and coauthors, exhibit 2 (authors’ analysis of survey data from the 2019 National Mental Health Services Survey administered by the Substance Abuse and Mental Health Services Administration.
As shown in Exhibit 7, 34 states had 50 percent or more of substance use treatment facilities in non-compliance. Missouri had the lowest rate of non-compliance, with only 23 percent of Section 1557-covered treatment centers noncompliant. With 88 percent of substance use treatment facilities not providing sign language interpreters, Idaho was the state with the highest non-compliance.
Exhibit 7. Prevalence of substance use treatment facilities in the US that are covered entities under Section 1557 of the Affordable Care Act but do not provide services in sign language to Deaf and hard-of-hearing patients, 2019.
Source: “Communication Access In Mental Health And Substance Use Treatment Facilities For Deaf American Sign Language Users,” Tyler G. James and coauthors, exhibit 3 (authors’ analysis of survey data from the 2019 National Survey of Substance Abuse Treatment Services administered by the Substance Abuse and Mental Health Services Administration).
The DHH ASL-user population faces unique health risks resulting in significant need for accessible mental health and substance use treatment facilities, including greater rates of “interpersonal violence and suicide, along with a two- to threefold risk of mood and anxiety disorders, lifetime trauma exposure, and substance use,” compared to non-DHH people, reported James and coauthors.
Risks Inside Care Facilities
Preventable Safety Incidents among Hospital Patients with Developmental Disabilities in England
Individuals with developmental disabilities have more hospital admissions than the general population, thus exposing them to the risks of hospitalization in greater numbers. Moreover, as authors Rocco Friebel and Laia Maynou wrote in their study on the prevalence of five avoidable safety incidents reported among hospital patients in the English National Health Service from 2017-2019, “patient safety incidents disproportionately impact disadvantaged and high-need population groups”—a cohort that includes individuals with developmental disabilities.
Specifically, Friebel and Maynou found that among patients with developmental disabilities, the likelihood of experiencing harm was up to 2.7-fold higher compared to patients without developmental disability.
As shown in Exhibit 8, among individuals with development disabilities, those with congenital malformation syndrome and chromosomal abnormalities were most likely to experience a patient safety event while hospitalized, with each one significantly more likely to experience an incident than patients without a diagnosed developmental disability on at least four of five outcomes. Most of the assessed patient groups also experienced above-average rates of pressure ulcers, post-operative sepsis, and post-operative pulmonary embolism or deep vein thrombosis.
Exhibit 8. Likelihood of experiencing 5 avoidable in-hospital patient safety incidents for people belonging to 4 developmental disability groups for patients admitted and discharged in the English National Health Service between April 2017 and March 2019.
Source: “Assessing The Dangers Of A Hospital Stay For Patients With Developmental Disability In England, 2017–19,” Rocco Friebel and Laia Maynou, exhibit 3 (logistic regression analysis based on information from the Hospital Episode Statistics database, English National Health Service).
Mistreatment Of Physicians With Disabilities
Physicians with disabilities are an underrepresented group in medicine, comprising only three percent of the active US physician workforce. In their October article, Lisa Meeks and coauthors explained that mistreatment is “often more frequent for physicians identifying with groups underrepresented in medicine,” and can take on many faces, including “discrimination, harassment, physical harm, or threat of physical harm.”
Based on their analysis of a nationally representative sample of 6,000 practicing physicians in 2019, Meeks and coauthors reported that compared to their non-disabled peers, physicians with disabilities had a significantly higher likelihood of experiencing every measure of mistreatment from patients and coworkers.
Physicians with disabilities were more likely to have been threatened with physical harm by coworkers and patients. Disabled physicians were over 17 times more likely to have been physically harmed by coworkers and 6.5 times more likely to have been physically harmed by patients. They were 5.8 and 3.6 times more likely to be subjected to unwanted sexual advances from coworkers and patients, respectively (Exhibit 9).
Exhibit 9. Odds ratios for physicians with disabilities having experienced workplace mistreatment at least once during the previous 12 months compared to physicians without disabilities, 2019.
Source: “Patient And Coworker Mistreatment Of Physicians With Disabilities,” Lisa Meeks and coauthors, exhibit 3 (authors’ analysis using data from the 2019 National Sample Survey of Physicians, developed by the Association of American Medical Colleges).
A Call to Strengthen the Evidence Base
Many people with disabilities and loved ones supporting them know all too well these themes discussed in the Disability & Health issue. Unfortunately, it often takes more than personal experience with an issue to grab the attention of policymakers, investors, and government leaders—especially when people having those experiences are marginalized.
Thus, one the of the first steps toward addressing the many inequities experienced by people with disabilities is to gather and disseminate comprehensive and reliable national data on characteristics of the disability population, as well as their needs and experiences. For reasons highlighted in several papers in the October issue, lack of complete and consistent data on disability in public health and health care delivery systems make it difficult to obtain accurate estimates of disability prevalence, assess needs, and measure disparities.
In a study of eligibility criteria for clinical trials, Willyanne DeCormier Plosky and coauthors discovered exclusions for many categories of disability. The highest frequencies of exclusion were in the categories of “other chronic” (93 percent), psychiatric (68 percent), substance use (62 percent), HIV or hepatitis (53 percent), and cognitive/intellectual (42 percent) disabilities (Exhibit 10). Documented justification was provided in just 24 percent of exclusions.
Exhibit 10: Percent of study protocols with eligibility criteria potentially precluding people with disabilities from clinical trials, by disability-related domain and therapeutic area, 2015–21.
Source: “Excluding People With Disabilities From Clinical Research: Eligibility Criteria Lack Clarity And Justification,” Willyanne DeCormier Plosky and coauthors, exhibit 3 (authors’ analysis of eligibility criteria of 97 clinical trial protocols on ClinicalTrials.gov).
Major improvements in data collection standards and practices are needed to strengthen the evidence base for policies and programs to reduce disparities, advance equity, and improve health and well-being for Americans with disabilities.
A special thanks to my Health Affairs colleagues for their guidance and editorial support.