Health Status Assessments

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.

PACIO Recommendation V6 Disability Status Rename / Move

• Data Class: Health Status Assessments  (V5)
• Data Elements: Disability Status (V5)
• Recommendation: Remove the Disability Status data element from the Health Status data class and instead add a new data element entitled “Disability” to the patient demographic data class. 
• Rationale: 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.  
• The PACIO Community supports previous CMS and CDC submissions which reflect 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. For example, 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 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. 
• Routinely collecting information under the notion of Disability Status as 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 under Health Status Assessment may result in incorrect classification of the patient. 

Disability Status

Health Status – Disability Status

NACHC is supportive of the concept of disability status; however, it is not likely to support interoperability to solely create a terminology binding to support the concept. Because the concepts in the draft version generally represent non-semantically equivalent types of disability status and observations about these conditions, we believe that creating a class for this concept will likely create larger transitions of care documents without being able to be processed by receiving systems. This approach creates liability for providers who at best can use this data as free text in this case and contributes to data overload and burnout. We strongly recommend providing either specific category of functional status with equivalent semantics and clear terminology bindings. NACHC encourages ONC to support work on a list of preferred instruments and mappings that will assist organizations in normalizing these types of data and work with other agencies that could extending disability documentations into coded standards and workflows.