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Consider a deaf patient who joins a telehealth appointment only to discover that the platform only allows a single participant, shutting out their sign‑language interpreter. Federal surveys seeking feedback on their health care experiences might record their dissatisfaction, but not the communication barrier at its root. A new government report finds that gaps like these are built into the system, inhibiting accessibility.
The Government Accountability Office (GAO) released findings in December from an investigation showing that federal data systems fail to capture the unique barriers disabled people face in health care. When federal data does not capture these experiences, they remain invisible to policymakers, the congressional watchdog asserts.
By not collecting data from disabled people regarding health care accessibility, the GAO writes that the Department of Health and Human Services (HHS) “may not adequately track its progress or be held accountable for meeting its own strategic goals.”
The importance of federal disability data
Data systems may seem like a technical issue, but they increasingly carry real political and practical weight.
In policymaking, federal data is treated as “official statistics,” giving it legitimacy as the government’s most trusted source of knowledge. Federal disability data is important as it represents the closest thing to an official record on disabled people’s lives.
Over the past few decades, the federal government has streamlined the use of data in a shift often described as “evidence-based policymaking.” Federal disability data now underpins the enforcement of major disability rights protections enacted through the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. The data also helps policymakers, researchers, and advocates assess the needs of disabled people, design programs to address those needs, and allocate federal funds to support those efforts.
Challenges with collecting data on disability
HHS is primarily responsible for producing official health statistics on disabled communities. Since 2011, HHS has standardized using a six-question set from the American Community Survey (ACS)—the ACS-6—to identify disability, asking respondents whether they experience any of six functional limitations.
But the GAO found that HHS surveys don’t consistently use this measure. Some surveys modify the questions, while others use a different measure altogether, making it difficult to compare disability data across the agency.
There is also a frequent mismatch between who is counted as disabled in health surveys and who is protected under disability rights laws. As a result, the ACS-6 often misguides evidence-based policymaking about disabled people.
Some disability researchers argue that surveys which use the ACS-6 often produce unreliable estimates. They claim that its focus on functional limitations is too narrow to capture disabled experiences, which are often complex and context-dependent.
Scott D. Landes, a sociology professor and faculty associate in Syracuse University’s Aging Studies Institute, has found that the ACS-6 often misses people who experience disability-based discrimination but have no functional limitations. Landes also contends that the ACS-6 is less likely to count people whose disabilities flare intermittently.
“Those groups are just not being captured,” Landes said.
The GAO also found that HHS neither collects accessibility data nor plans to, despite committing to use data to promote accessibility.
Susan Jenkins, who led evidence-based policymaking as the Director of the Division of Evidence, Evaluation and Data Policy at HHS until last year’s reorganization, cautioned that measuring accessibility is inherently difficult because it varies across populations and purposes.
“That’s not to say accessibility shouldn’t be measured,” Jenkins reiterated. “But it is much more complex than people may realize.”
What can be done?
The chronic undercount of disabled people obscures the reality that they make up a large and growing constituency. It also makes it easier for the government to ignore its own finding that even with legal protections in place, disabled people continue to face bias and discrimination in health care.
Despite these limitations, advocates say there are opportunities to produce more accurate and useful disability data.
In September 2023, the National Institutes of Health recognized disabled people as a “population with health disparities,” encouraging further research on disabled people’s health issues and unmet needs. The following month, disability researchers and advocates mounted a unified—and successful—campaign to stop the Census Bureau from replacing the ACS-6 with a new measure, arguing that it would undercount disabled people.
Like the ACS-6, the Washington Group Short Set (WG-SS) asks about functional limitations in six areas, though it provides survey respondents with more detailed response options. In his research, Landes has found that surveys that use the WG-SS undercount deaf and blind respondents, while other researchers have observed undercounts of people with serious mental illness.
Advocates note the importance of the moment as an impetus for building consensus around what a disability standard should measure.
Landes joined the opposition to the WG-SS, saying that the ACS-6, even with all of its issues, was still marginally better.
“Our overall goal is we need better than both of these,” Landes said. “We need something that we’re not having to choose between two bad choices.”
In May 2024, HHS expanded the nondiscrimination provisions in Section 1557 to require nearly the entire health care industry to provide disabled people with a more comprehensive set of accommodations.
Dr. Lisa Iezzoni, a medical researcher and Harvard Medical School professor, thinks the effort to ensure compliance with the new regulations creates “a potential new source for data.”
Since the new rule went into effect, Iezzoni noted how “a lot of hospitals are now collecting detailed information from patients about their disabilities so they can have reasonable accommodations available when they arrive.”
Lessons from the 2024 SPD 15 revision
Some advocates for a standard disability measure are looking to the successful campaign by the Arab American and broader Middle Eastern and North African (MENA) population to revise Statistical Policy Directive No. 15 (SDP 15), which governs federal race and ethnicity data. For decades, SPD 15 required agencies to classify MENA populations as “white,” rendering them invisible in federal statistics.
After repeated failures to add a MENA category to the census, advocates shifted their strategy to the Office of Management and Budget (OMB), which regulates the Federal Statistical System (FSS) through directives like SPD 15.
MENA data advocates requested that the OMB establish a detailed MENA category, which allows respondents to self-identify in ways that more appropriately portray the racial, ethnic, linguistic, and cultural diversity between people from the MENA region. For the disabled population, Landes noted that a similarly detailed measure is needed to “drill down to [the] specific disabilities” represented within the broader disabled population.
Meeta Anand, the senior program director for Census and Data Equity at the Leadership Conference on Civil and Human Rights—who worked on the SPD 15 revision and efforts to protect the ACS-6—sees the value in pushing for an OMB directive on disability.
“Something like [SPD 15] for disability data would be helpful,” Anand said, at the very least, to have consistency across agencies.
OMB is not currently considering a standard disability measure and the GAO report reflects little urgency to fix longstanding problems with federal disability data. When MENA advocates faced a similar situation in the years leading up to the SPD 15 revision, they launched campaigns in states such as Illinois, New York, and California, demonstrating community support and accelerating federal action.
Some disability advocates believe they can follow a similar path, drawing upon successful efforts like that in Massachusetts, with a health department that adopted more inclusive disability measures. Through similar state-level campaigns, disability data advocates believe they can build consensus around a standard measure and momentum for a federal directive.
The bottom line
While the GAO report focuses on federal health surveys, the HHS represents merely one part of an FSS which, according to the American Statistical Association, faces a “crisis” amid decreased public trust.
Given the lack of trust in federal data collection, particularly, for instance, after the Trump administration proposed creating a national autism database, Anand said it is important to show that the government can collect and use data for the public good and ensure that “we’re understanding our communities and are able to tailor solutions for their needs.”
“Especially in a moment where we’re seeing weaponization of data, I think it’s really important to be like, ‘No, let’s situate it in a way that we can use it to benefit others,’” Anand said.
For Landes, that starts with establishing a measure that provides a good estimate for the size of the overall disabled population and captures the diversity of disabled experiences, which he and other experts argued that neither the ACS-6 nor WG-SS provide.
Once there is consensus for a standard disability measure, advocates noted that the OMB must issue a directive to ensure its adoption across the FSS. Anand expressed concern that, unless the federal government applies a standard disability measure to assess accessibility across different contexts—education, voting rights, employment, among others—they cannot meaningfully address rights for disabled people.
“If you’re not understanding the accessibility issues inherent because you don’t have a true measure of the population, then you’re not even creating the pathways for participation in democracy,” Anand said.
However, without enforcement, advocates fear that any new statistical policies would be little more than text on a piece of paper. Despite the OMB being obligated by statute to “maximize … the public benefit” of its surveys, it faces “mounting difficulty” to produce useful data, according to researchers. While new rules, such as the revised Section 1557 regulations, may provide a source of new data, the GAO described federal oversight of compliance with health accessibility laws as “limited.”
“If they did enforce the law, there could be substantial benefits for people with disabilities,” Iezzoni said.
Editorial Team:
Sahar Fatima, Lead Editor
Lara Witt, Top Editor
Stephanie Harris, Copy Editor
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