Health Status Assessments

Advancing Disability Status and Accommodation Elements

Disability Rights Education and Defense Fund (DREDF) is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. We are committed to increasing accessible and equally effective healthcare and opportunities for people with disabilities so they can lead full, productive lives in the communities of their choice.

We submit this comment to strongly support recommendations made by the Post-Acute Care InterOperability (PACIO) Project to reclassify Disability Status from its current classification under the US Core Data for Interoperability (USCDI) as an element of Health Status Assessments to classification as an element of Demographic Identification. In doing so, we are not claiming that disability status is irrelevant for health status. Rather, we assert that disability status is far more relevant to demographic and social identity, in the same way that race/ethnicity, gender, income, and other personal characteristics are recognized as demographic elements. The functional disability questions for disability status do not have a one-to-one relationship with precise clinical measurements, and they also cannot be directly mapped onto binary models such as healthy/unhealthy or well/unwell. Rather, the true value of the disability status questions lies in how they enable people with disabilities to recognize themselves and thereby count as subjects of needed research, individual patients who need accommodations and policy modifications to receive effective healthcare, and persons who experience multiple health-related barriers.

As DREDF has detailed in a 2024 brief on demographic disability data, such data is necessary to obtain:

• Granular research that will further unearth ongoing health inequities that are not attributable to clinical explanation, and that will aid law and policy makers to address the barriers and gaps in education, knowledge, and systems that lie behind disability-related healthcare disparities
• Disability identification that will trigger data and IT systems to obtain information needed for an accommodations data element that could finally enable people with various disabilities to receive equally effective healthcare;
• Research that can examine how disability interacts with other demographic factors and within/among subpopulations, allowing us to gain a fuller understanding of individuals can experience compounded barriers to health and healthcare

For similar reasons, we also strongly endorse the advancement of the Accommodation data element to at least Level 2, as recommended by Centers for Disease Control (CDC) and the Centers for Medicare and Medicaid - Center for Clinical Standards and Quality (CMS-CCSQ) in their submitted comments.

As identified in many of the comments submitted in support of the PACIO Disability Status and Accommodations recommendations, the disability community is finally seeing movement in the healthcare system to acknowledging disability status as a demographic element. Electronic health record vendors such as EPIC Systems are finally recognizing how health record keeping affects people with disabilities, health plans and clinics are developing ways to keep and use accommodations data, there are efforts at state and county levels to accurately gather demographic disability data. USCDI should be at the forefront of these efforts, helping to ensure consistency of, and guidance on, necessary disability data characterization.

As an organization is run by and for people with disabilities, DREDF calls for the adoption of the PACIO recommendations as a step that will help further advance the federal demographic data collection standards implemented by the federal Department of Health and Human Services almost 14 years ago.

Submitted by Silvia Yee, Policy Director, Disability Rights Education and Defense Fund (DREDF)

Advancing Disability Status and Accommodation Elements

Disability Rights Education and Defense Fund (DREDF) is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. We are committed to increasing accessible and equally effective healthcare and opportunities for people with disabilities so they can lead full, productive lives in the communities of their choice. 

We submit this comment to strongly support recommendations made by the Post-Acute Care InterOperability (PACIO) Project to reclassify Disability Status from its current classification under the US Core Data for Interoperability (USCDI) as an element of Health Status Assessments to classification as an element of Demographic Identification. In doing so, we are not claiming that disability status is irrelevant for health status. Rather, we assert that disability status is far more relevant to demographic and social identity, in the same way that race/ethnicity, gender, income, and other personal characteristics are recognized as demographic elements. The functional disability questions for disability status do not have a one-to-one relationship with precise clinical measurements, and they also cannot be directly mapped onto binary models such as healthy/unhealthy or well/unwell. Rather, the true value of the disability status questions lies in how they enable people with disabilities to recognize themselves and thereby count as subjects of needed research, individual patients who need accommodations and policy modifications to receive effective healthcare, and persons who experience multiple health-related barriers.

As DREDF has detailed in a 2024 brief on demographic disability data, such data is necessary to obtain:

• Granular research that will further unearth ongoing health inequities that are not attributable to clinical explanation, and that will aid law and policy makers to address the barriers and gaps in education, knowledge, and systems that lie behind disability-related healthcare disparities
• Disability identification that will trigger data and IT systems to obtain information needed for an accommodations data element that could finally enable people with various disabilities to receive equally effective healthcare;
• Research that can examine how disability interacts with other demographic factors and within/among subpopulations, allowing us to gain a fuller understanding of individuals can experience compounded barriers to health and healthcare

For similar reasons, we also strongly endorse the advancement of the Accommodation data element to at least Level 2, as recommended by Centers for Disease Control (CDC) and the Centers for Medicare and Medicaid - Center for Clinical Standards and Quality (CMS-CCSQ) in their submitted comments. When people with disabilities are consistently asked about the healthcare accommodations and policy modifications that they need, and when that information is consistently recorded and used, we will be that much closer to achieving health, choice, and independence as individuals and as a community.

As identified in many of the comments submitted in support of the PACIO Disability Status and Accommodations recommendations, the disability community is finally seeing movement in the healthcare system to acknowledging disability status as a demographic element. Electronic health record vendors such as EPIC Systems are finally recognizing how health record keeping affects people with disabilities, health plans and clinics are developing ways to keep and use accommodations data, there are efforts at state and county levels to accurately gather demographic disability data. USCDI should be at the forefront of these efforts, helping to ensure consistency of, and guidance on, necessary disability data characterization.

As an organization is run by and for people with disabilities, DREDF calls for the adoption of the PACIO recommendations as a step that will help further advance the federal demographic data collection standards implemented by the federal Department of Health and Human Services almost 14 years ago.

Support for Moving Disability Status to Patient Demographics

As a disability/health scholar and social work professional who co-chairs the WHO Functioning and Disability Reference Group, I strongly support the recommendation to move disability status from Health Status Assessments to Patient Demographics. 

The change would signify an important shift in health care where disability moves away from being viewed as an individual medical problem to a recognized aspect of identity shaped by societal factors. The shift better aligns with global standards and terminology reflected in the International Classification of Functioning, Disability and Health, or ICF, where disability refers to the interaction between a person's health condition(s) and their contextual factors (environmental and personal factors). 

Collecting disability data in health records is a crucial first step toward identifying disparities in care and health outcomes that individuals with disabilities experience. It enables tracking differences in health statistics, such as disease prevalence and access to preventive services, between persons with and without disabilities. 

Documenting disability status as a patient demographic will allow healthcare providers to better identify and provide necessary accommodations and auxiliary aids, such as sign language interpreters or adjustable exam tables, to ensure equitable and effective care. 

This recommendation promotes a more inclusive approach to healthcare by allowing patients to report their own disability status, moving beyond a sole reliance on diagnostic codes often considered problematic.

Reclassifying Disability Status

Comments submitted by Barbara Kelley, Executive Director, Hearing Loss Association of America.

Disability is a demographic characteristic, not a clinical condition. Its current placement under Health Status Assessments risks conflating disability with illness or impairment, which can lead to misinterpretation and unintended consequences in care delivery and data analysis. Reclassifying Disability Status under Patient Demographics/Information would:

• Align with federal guidance from the HHS Data Council and CMS practices.
• Promote more accurate and respectful representation of individuals with disabilities.
• Enhance the utility of demographic data for equity analysis, population health, and policy development.

This change is essential to ensure that disability data is treated with the same rigor and respect as other demographic elements such as race, ethnicity, and gender identity.

Recommend Moving Disability Status to Patient Demographics

• Recommendation: Recommend moving the Disability Status data element to the Patient Demographics/Information data class.
• Rationale: The PACIO Project Community* recognizes and appreciates the significant work undertaken by the HHS Data Council in developing the Disability Status data collection standards. We understand the historical context and the deliberate efforts made by the Council and its dedicated workgroup to ensure that this data accurately captures necessary information, particularly as it relates to demographic data collection. The Council’s approach, as outlined in the "U.S. Department of Health And Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status" clearly demonstrates that Disability Status is intended to be collected as part of demographic information, alongside race, ethnicity, and sex.
  • The PACIO Community’s ongoing concern is that Disability Status under USCDI continues to be classified under the Health Status Assessments data class, which does not reflect its primary purpose as a demographic identifier. Disability Status, like race, ethnicity, and sex, is a fundamental demographic characteristic and should be grouped accordingly to ensure consistency and clarity in data collection and use. Moving this data element to the Patient Demographics/Information data class would better align with the intent of the HHS Data Council and the standards described in the aforementioned guidance document.
  • Furthermore, collecting the patient asserted Disability Status as part of Health Status Assessments risks conflating disability with clinical health assessments, which may lead to misinterpretation or unintended consequences, such as influencing disability benefits or incorrectly classifying patients. Disability, as a demographic characteristic, does not inherently reflect a person’s health status, functional status, or cognitive status, which is typically captured under Health Status Assessments.
  • This recommendation is consistent with current practices in post-acute care (PAC) settings and aligns with CMS guidance, Inventory of Resources for Standardized Demographic and Language Data Collection. By classifying Disability Status within Patient Demographics/Information, we can more accurately capture and utilize this data for demographic analysis, support better clinical decision-making, and avoid conflating disability assertions with health assessments.
• Reference: The HHS Data Council serves as the principal, senior internal Departmental forum for coordinating HHS data collection and analysis activities. The Council’s workgroup leveraged extensive experience in collecting and analyzing demographic data to develop the Disability Status collection standard. U.S. Department of Health And Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status
• * The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, that aims to advance interoperable health information exchange between post-acute care (PAC) providers, patients, and other key stakeholders across health care.

PACIO recommends changing Disability Status to Disability

• Data Class: Health Status Assessments
• Data Element: Disability Status (Draft V6)
• Recommendation: Remove the Disability Status data element from the Health Status Assessments data class and instead add a new data element entitled Disability to the Patient Demographics/Information data class.
• Rationale: The PACIO Project Community* recommends removing the Disability Status data element from the Health Status Assessments data class and instead add a new data element entitled, Disability to the Patient Demographics/Information data class. This recommendation is endorsed by both CMS and CDC as described in previous USCDI comments and the PACIO Project Community supports their view that “identifying a person with a disability does not necessarily have a bearing on how healthy a person is” or the status of one’s health. As an example, given in a CMS comment for this data class, “a person’s need to use a mobility aid, like a wheelchair, does not convey any information about why they need that aid or provide any information about their health, only that they use a mobility aid and that they may need mobility accommodations. Information surrounding a disability could be captured under other existing data elements such as Functional Status or Mental/Cognitive Status. Collecting and transmitting data on disability, such as presence or need for additional support, in a standardized way is vital to recognition of disability as a key component” and a “more comprehensive understanding of patient demographics.
• Routinely collecting information under the notion of a disability as a status through a Health Status Assessment also opens the way for unintentional use of the data, namely in determining or altering a patient’s disability benefits. Using the data element in this way is at odds with routine clinical assessment of a disability, which is notionally captured as an absence of function or change in function under Functional Status or Cognitive Status. Because of the highly structured rules regarding disability, assessments of disability, and determination of disability, the routine collection of a disability assessment as described in Disability Status data element under Health Status Assessment data class may result in incorrect classification of the patient.
• This recommendation aligns with how data are currently collected in PAC settings and aligns with CMS recommendations. By being able to collect information about a person’s disability as a demographic, we will be able to better delineate and prevent conflating of disability, functional status, and cognitive status, ultimately supporting better clinical decision-making and patient care.
• * The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange.

CMS-CCSQ Recommend revising the Disability Status data element

Data Element: Disability Status (USCDI v5)

1. Recommendation: Remove the Disability Status data element from the Health Status Assessment data class and instead add a new data element entitled, “Disability” to the Patient Demographic data class.
2. Rationale: CMS believes that identifying a person with a disability does not necessarily hold bearing on the status of one’s health or how healthy an individual is. For example, a person’s need to use a mobility aid, such as a wheelchair, does not convey any information about why they need that aid or provide any information about their health—only that they use a mobility aid and that they may need mobility accommodations. Information surrounding a disability could be captured under other existing data elements such as Functional Status or Mental/Cognitive Status. Collecting and transmitting data on Disability Status, such as presence or need for accommodation, in a standardized way is vital to recognition of disability as a key component of identity and allows analysis of outcomes and conditions in an intersectional way, incorporating race/ethnicity, age, sex, and disability together for a more comprehensive understanding of patient demographics.