Importance Of Disability Data Aahd

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 is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt, and build upon this work, for... See https://creativecommons.org/licenses/by/4.0/. Disability is complex and multifaceted, complicating governments’ efforts to collect the high-quality, comprehensive data necessary for developing, implementing, and monitoring policies. Yet data are needed to obtain information on functioning in the population, to identify the population with disabilities, and to disaggregate indicators of well-being by disability to determine whether people with disabilities are participating... In this article we discuss the need for data harmonization to improve disability research and policy. We describe standard question sets on disability developed for inclusion in surveys and administrative systems, as well as the need for coordination of both statistical and administrative data systems.

Until disability data become more harmonized, it will not be possible to support the development of comprehensive, evidence-based policies and programs to address the needs of the population with disabilities. Globally, people with disabilities have worse outcomes across a wide range of indicators, including poverty, employment, education, health, and violence.1,2 The Convention on the Rights of Persons with Disabilities, the driving force behind international... This article provides guidance on building an appropriate disability data system within a country to support policy efforts aimed at improving the lives of people with disabilities. In this article we define disability as the result of the negative interaction between people who have difficulties in functioning in core activity domains and attitudinal and environmental barriers. People with disabilities are those who have functional limitations and therefore are at risk of exclusion when faced with these barriers. This definition is embedded in the question sets developed by the Washington Group on Disability Statistics, as described below.

Disability data serve many important purposes. First, they can describe the functional status of the population and subpopulations defined, for example, by sex; age; and type, degree, date of onset, and cause of disability. Functional status is defined as the extent of difficulties in carrying out core activities such as hearing, seeing, walking, cognition, and communication. Second, the identification of the population with disabilities can be used to disaggregate outcome indicators, such as poverty, to identify gaps in participation in social roles such as attending school, working, and civic and... The differences in levels of participation in these routine activities between those with and without disabilities are referred to as disability gaps. Both describing the functional status of the population and identifying disability gaps are essential for understanding where policy is needed and which populations to target.

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: 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. Disability Rights Education and Defense Fund (DREDF) is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. Founded in 1979, DREDF works to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.­

3075 Adeline Street, Suite 210 Berkeley, CA 94703 dredf.org The National Health Law Program (NHeLP) protects and improves access to health care for low-income and underserved people and works to advance health equity. We believe that everyone should have access to high quality, equitable health care and be able to achieve their own highest attainable standard of health. We enforce health care and civil rights laws; advocate for better federal and state laws and policies; train, support and partner with national, state and local health and civil rights advocates; and use strategic... 1444 I Street NW, Suite 1105 Washington, DC 20005 healthlaw.org The Current State of Disability Data Collection in Healthcare

What Needs to Change in Health Data Collection AAHD and the Lakeshore Foundation have submitted direct comments; and, AAHD has joined the Disability and Rehabilitation Research Coalition (DRRC) submitting comments to the NIH Strategic Plan for Disability Health Research draft framework. AAHD is a DRRC steering committee member. The AAHD and Lakeshore submission expands on the importance of disability data. AAHD is also a member of the Consortium for Constituents with Disabilities (CCD), Task Force on Health. The CCD Health Task Force co-chairs submitted comments.

The three March 12 letters are here: AAHD and Lakeshore submission; DRRC submission; and CCD Health Task Force co-chairs submission. 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. The Modern Medicaid Alliance sat down with Karl Cooper and Nuria Piracha from the American Association on Health and Disability to learn more about the organization and their efforts related to Medicaid. Modern Medicaid Alliance (MMA): Tell us about the American Association on Health and Disability (AAHD) and how you help improve the overall health of adults and children with disabilities. Karl: AAHD is dedicated to ensuring health equity for children and adults with disabilities through policy, research, education, and dissemination at the federal, state, and community levels. AAHD strives to advance health promotion and wellness initiatives for people with disabilities. Our goals are to reduce health disparities between people with disabilities and the general population, to support full community inclusion, to promote full accessibility in health care settings, to integrate disability into the broader...

AAHD is governed by an esteemed group of board members representing people with disabilities, disability researchers, disability advocates, health care, and public health professionals. MMA: How does AAHD help people with disabilities navigate the Medicaid coverage environment? Nuria: In 2013, AAHD established the National Disability Navigator Resource Collaborative which aims to provide cross disability information and support to navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information...

People Also Search

• Importance of Disability Data - AAHD
• Harmonizing Disability Data To Improve Disability Research And Policy
• A year of disability health equity milestones: Why disability data is ...
• Disability and Health Data Now | Disability and Health | CDC
• Creating Inclusive Disability Data Systems | ASTHO
• Charting Equality: Why Demographic Disability Data is Good for ... - DREDF
• NIH Strategic Plan for Disability Health Research - Three AAHD ...
• Resources from the American Association on Health and Disability
• Improving Care for People with Disabilities | AHA
• Supporting Americans Living with Disabilities: Q+A with the American ...