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Improving Care For People With Disabilities Starts With Collecting Dat

Leo Migdal
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improving care for people with disabilities starts with collecting dat

An estimated one in four adults in the U.S. lives with a disability—and studies show that people with disabilities receive poorer quality of care and experience worse outcomes than people without them. Collecting data on disability status is the first step to understanding the extent of health disparities faced by individuals with disabilities, and developing targeted interventions to drive improvement. The National Committee for Quality Assurance (NCQA) recently completed an environmental scan to understand how disability is defined, identify barriers that limit access to high-quality care for people with disabilities, examine collection of data... Building on the foundational work of the disability advocacy and research communities, NCQA’s research found that variation in collecting disability data highlights the need for process improvement for consistency and standardization. The definition of “disability” is constantly evolving.

Many health care providers were trained according to the medical model, which views disability as an impairment, but this model can be limiting and undercount people with disabilities. Other models, such as the social model, seekto understand disability in the context of societal challenges or barriers that limit a person’s ability to participate in their life and in the community. The biopsychosocial model takes a more holistic view of the effects of biological, psychological, social and cultural interactions on a person’s experience of disability. The definition is often based on the needs of the organization collecting the data, focusing on functional impairment, relying on third-party assignation of disability status—and potentially leading to underestimation of people with disabilities. Although there are standardized assessments, such as the American Community Survey (ACS) 6 Questions and the Washington Group Short Set on Functioning (WG-SS), they are not consistently used, and many organizations rely on homegrown... There are important health differences between people with and without disabilities.

Do you know what they are in your state or territory? The Disability and Health Data System (DHDS) can help you find out. Disability doesn't have to equal poor health. However, adults with disabilities are more likely to be obese,1 smoke,2 have high blood pressure,3 and be physically inactive.4 These are all preventable factors that can increase the risk for chronic diseases such as... CDC created the Disability and Health Data System (DHDS) to provide the vital information needed to better understand the health needs of adults with disabilities at the state and national levels. Equipped with these data, state and territorial epidemiologists, researchers, policy makers, public health professionals and everyone interested in the health of adults with disabilities can plan for inclusive communities that offer the programs and...

Together with our partners, CDC works across public health disciplines to improve disability inclusion and considerations in ongoing data monitoring systems, disease prevention and health promotion programs, and emergency preparedness and response efforts. DHDS includes analyzed BRFSS data from 2016–2022 on: How do we best support the health needs of diverse disability communities? What can we do to provide inclusive and affirming care, while removing barriers? Determining the answers to these questions calls for data collection that reflects a broad definition of disability, and allows for comparison across other demographic groups, like race. At least 1 in 4 Americans are part of the disability community.

Better data collection is a way toward improving outcomes in health and service provision. In this next installment in our policy priorities blog series, we’re looking into the importance of disability data to advance inclusive health research. High-quality data collection is the foundation of actionable disability health research. Over the last few years, tremendous work has been done to advance the vision of making disability a federal research priority. A series of major developments traces how this progress has begun to enter the public sphere: A strong roadmap for improving outcomes for people with disabilities is highlighted in the Federal Evidence Agenda on Disability.

This document indicates the federal government’s role in collecting the right evidence to improve programmatic supports and overcome barriers that might reduce community participation for the disability community. Data-informed decision-making is at the heart of this vision. Within the health agenda, better data was requested to support the transition from pediatric to adult disability programs. Uptake of accessible health promotion and public health emergency programs was mentioned for further study as well. In order to improve the implementation of community living and long-term services and supports (LTSS), the report calls for data collection on community participation measures, like how people with disabilities engage in local arts,... It also calls for a deeper assessment of LTSS programs and needs across the country.

This agenda was released on January 19, 2025. Now at the start of a new administration, disability data collection faces some major challenges and roadblocks. In a time when data drives nearly every policy decision, one critical area continues to be neglected: disability data. The future of comprehensive disability data collection is increasingly uncertain, as many programs that once provided this foundational information are now paused, eliminated, or undergoing restructuring. These disruptions not only slow our progress but risk erasing years of valuable longitudinal data—information that policymakers desperately need to understand health trends among people with disabilities, plan for future services, and implement effective... Longitudinal data is essential to track what works, what doesn’t, and where taxpayer dollars can be most efficiently spent.

When disability data is compromised, so too is the ability of federal and state policymakers to make informed decisions about resource allocation. These insights are not just numbers; they directly shape access to health care, housing, education, and employment opportunities for millions of Americans. This brief outlines promising practices that states and territories can implement to collect disability data to advance health equity. A full list of citations is available in the PDF version of this brief. Over 28% of adults in the United States have a disability, yet people with disabilities are often overlooked or ignored when collecting and using data, creating a challenge for evidence-based policy making. There is considerable literature indicating that people with disabilities face barriers to healthcare access and experience unaddressed health inequities.

It is therefore important that states and territories address disparities faced by disabled people in efforts to advance health equity. Disability data allows states and territories to better allocate resources, plan social services and benefits, improve accessibility of public spaces and digital resources, and increase inclusivity of education, employment, and healthcare-related programs. This brief outlines promising practices that states and territories can implement to collect disability data to advance health equity. States and territories vary in how they collect and use data on disability. For example, some states utilize the six disability data questions used in the Census Bureau’s American Community Survey (ACS) and are also used in the Centers for Disease Control and Prevention (CDC) Behavioral Risk... Within state programs and departments, disability data is also collected using combinations of questions from the ACS, Washington Group, or unique questions developed by the state or territory.

The lack of definitive guidelines and methods for disability data collection within and across states and territories, and limitations with current disability data measures, create challenges when comparing and analyzing disability data. While it is clear that standards for disability data are necessary to advance health equity, an in-person roundtable discussion hosted by the National Governors Association with state and territory policymakers confirmed the need for... Key strategies that states and territories use to gather data include crafting legislative mandates for disability data collection, shifting the focus of disability from a medical health outcome to a demographic group and health... Colorado and Oregon have passed legislation (Table 1) requiring state health departments and agencies to collect disability data. A key reason for passing this legislation was to standardize disability data collection across state health departments and organizations, ensuring consistent data to tackle health inequities, which is an approach outlined in the Affordable... Additionally, in Oregon, during the COVID-19 pandemic, all healthcare providers were required to collect and report race, ethnicity, preferred language and disability status data in all COVID-19 health encounters.

Likewise, Colorado required collecting and reporting disability, race, ethnicity, sexual orientation, and gender identity data by all state and county, district, and municipal public health agencies (Table 1) specifically to address health inequities. As part of the Workforce Innovation and Opportunity Act (WIOA), Colorado requires the tracking of disability employment data. Both Colorado and Oregon require the tracking of Individualized Education Program (IEP) and 504 Plans through the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act. IEPs are designed to provide students access through specific education plans, whereas 504 plans provide students accommodations to access general curriculums. Collecting disability education and early intervention data allows states to identify and track these important components of disability throughout the lifespan. By including disability as one of the main categories of data collection, states can better analyze their impact on health equity.

Reducing disparities in health outcomes through practical solutions The American Hospital Association is expanding its work on reducing disparities in health outcomes to include people with disabilities. The Americans with Disabilities Act defines “disability” as physical or mental impairment that substantially limits one or more life activities, a history or record of such an impairment, or the perception by others that... The solutions below were co-designed by hospital leaders, clinicians and disability advocates during a national convening focused on improving care and outcomes for people with disabilities. Participants identified three areas where hospitals and health systems can take meaningful action: Together, hospitals and health systems can reduce disparities in health outcomes and ensure every patient receives care that is dignified, respectful and responsive to their needs.

July 14, 2025 | Maggie Nilz, Zeeshawn Chughtai Modernizing how public health systems collect, exchange, and apply disability-related data is essential to designing inclusive, adaptive, and responsive infrastructure. Across today’s fragmented data landscape — spanning administrative claims, electronic health records, surveys, and public health program databases — valuable disability data often remain siloed, inconsistently structured, or underleveraged. A wide array of data sets and systems could be better utilized to understand the health needs of people with disabilities. However, varying definitions, a lack of standards and governance, and inconsistent application continue to generate uncertainty for public health agencies. A data modernization approach starts to address these limitations by emphasizing standardized data elements, platform interoperability, system usability, and purposeful design.

This enables decision-makers to better understand the health needs of people with disabilities. State health agencies are already demonstrating leadership in aligning modernization strategies with more comprehensive disability data practices. In Colorado, HB 22-1157 authorized the Colorado Department of Public Health and Environment to collect enhanced demographic data, including disability status, across local health agencies and state programs. This legislation aims to ensure more accurate population representation, inform public health resource allocation, and support community planning. This policy was highlighted in ASTHO’s 2023 Legislative Prospectus on Data Modernization, which examines how legislative levers can support sustainable infrastructure development. Missouri’s Department of Health and Senior Services, meanwhile, became the first state-level public health agency globally to apply the Healthcare Information and Management Systems Society’s Digital Health Indicator to assess digital maturity as documented...

The assessment revealed key strengths and limitations in privacy, integration, and predictive analytics, offering a roadmap to build more inclusive, technology-enabled systems.

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