Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.

Data Element
Disability Status
Description (*Please confirm or update this field for the new USCDI version*)

Assessments of a patient’s physical, cognitive, intellectual, or psychiatric disabilities. (e.g., vision, hearing, memory, activities of daily living)

Applicable Vocabulary Standard(s)

Applicable Standards (*Please confirm or update this field for the new USCDI version*)
  • Logical Observation Identifiers Names and Codes (LOINC®) version 2.72
Submitted By: Grace Cordovano / Enlightening Results
Data Element Information
Data Element Description Represents information or details about an individual's physical, cognitive, intellectual, or psychiatric disabilities.
Use Case Description(s)
Use Case Description Individuals living with disabilities face barriers to receiving proper medical care when their doctors and care teams are not aware of existing disabilities. Consequently, these barriers exacerbate health disparities and result in inferior care and poor outcomes. Appointments may need to be rescheduled, care may not be coordinated properly, breakdowns in communication and trust will also negatively impact patient care without carefully documenting disability status. If properly documented, an alert could notify appropriate care team members and staff to address any physical access barriers, arrange for interpreters, plan for various forms of communication and patient support tools.

Applications for disability benefits could be further automated and streamlined with the addition of this data element.

If we are going to improve the lives and care of individuals living with disabilities, we must prioritize capturing and sharing this data accordingly.
Estimate the breadth of applicability of the use case(s) for this data element Over 61 million (roughly 1 in 4) adults in the United States live with a disability. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=61%20million%20adults%20in%20the,is%20highest%20in%20the%20South.
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Reducing the cost of care
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) N/A
Additional Specifications http://hl7.org/fhir/us/ecr/2021Jan/StructureDefinition-disability-status.html
Current Use Not currently captured or accessed with an organization
Extent of exchange N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) Unknown
Restrictions on Use (e.g. licensing, user fees) Unknown
Privacy and Security Concerns Unknown
Estimate of Overall Burden Unknown
ASTP Evaluation Details
Each submitted Data Element has been evaluated based on the following criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 0 - Data element is captured, stored, or accessed in limited settings such as a pilot or proof of concept demonstration.
Criterion #3
Maturity - Current Exchange		 Level 0 - Data element is electronically exchanged in limited environments, such as connectathons or pilots.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 1 - Use cases apply to several care settings or specialties.

Comment

Submitted by nsnyder on

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.

Submitted by jpatterson@mitre.org on

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.

Submitted by pellertsen@aol.com on

Support of Moving Disability Status to Patient Demographics

Communication Access in Health Care (CAHC) is a program of Hearing Loss Association of America (HLAA), the largest consumer organization for people with hearing loss, numbered at approximately 50 million, in the U.S.  Members of the CAHC strategic team interact with a diverse group of stakeholders invested in the delivery of health care: providers, ADA coordinators, public health researchers and patients. The advocacy work of CAHC addresses the goal of facilitating effective communication for people with hearing loss. 

CAHC offers strong support for moving Disability Status to Patient Demographics.  This reclassification achieves the following: 

--Supports efforts to ensure access and compliance with US law (Rehabilitation Act, ADA, ACA Section 1557), which require accommodations and nondiscrimination.

--Potentially reduces misclassification or undercounting of people with disabilities who aren’t captured via diagnosis codes, which change over time and may not capture the functional status of the patient. 

--Facilitates comparison of outcomes by disability status, supporting research and the development of policy.

Submitted by bswenor on

Moving Disability Status Data Element to Patient Demographics

As co-founders of the Disability Health Equity Research Network (DHERN), we provide our strongest support for the PACIO Project’s proposal to move disability status to Patient Demographics. 

The Disability Health Equity Research Network (DHERN) is a collaborative of over 1,000 researchers, policymakers, advocates, and communities working to advance the health equity of people with disabilities. Improving disability data collection is a core part of our work. 

Collecting disability data as a demographic element is essential to identifying and addressing the barriers to healthcare that people with disabilities face. 

We are in full agreement that disability status should be collected and viewed as a demographic characteristic. Disability data should be moved from the Health Assessment data class to the Patient Demographics/Information data class. 

Collecting disability data as part of the Patient Demographics/Information data class aligns with federal standards outlined by the U.S. Department of Health and Human Services (HHS), is necessary to identify and address the known healthcare disparities that people with disabilities face, aligns with the National Institutes of Health (NIH) designation of people with disabilities as a health disparity population, and is an approach endorsed by the disability community. 

DHERN strongly urges the adoption of PACIO’s proposal, as this change is long overdue and necessary for developing evidence-based strategies that improve healthcare access and outcomes for people with disabilities.

Bonnielin Swenor, PhD, MPH, Co-Founder, Disability Health Research Network, Professor and Director, Johns Hopkins Disability Health Research Center

Scott Landes, PhD, Co-Founder, Disability Health Research Network, Professor, Sociology Department, Syracuse University

 

Submitted by Megan Morris on

Support of Moving Disability Status to Patient Demographics

The Disability Equity Collaborative (DEC) is a national community committed to advancing inclusion and accessibility for people with disabilities across the healthcare system. DEC brings together healthcare leaders, clinicians, researchers, professional societies, policymakers, and disability advocates to foster collaboration and drive systemic change. One of its cornerstone initiatives is the Leaders Learning Community, the largest network of healthcare disability coordinators in the United States. This group serves as the nation’s most comprehensive source of current knowledge, sharing best practices and the latest developments in disability-accessible care within U.S. healthcare systems.

As part of its mission, DEC strongly endorses the PACIO Project’s proposal to move disability status to Patient Demographics. We concur with the rationale that disability status is a demographic characteristic and therefore belongs within the Patient Demographics/Information data class. This perspective is grounded in both federal standards and a robust body of research showing that people with disabilities experience profound disparities in health and healthcare outcomes. These inequities cannot be explained by functional impairment alone, but are driven by structural conditions within and beyond healthcare—paralleling the experiences of other demographic groups. Recognizing this, the National Institutes of Health (NIH) has designated people with disabilities as a health disparity population.

By continuing to classify disability with the Health Assessment data class, we risk reinforcing the outdated view that disability is merely a medical condition requiring intervention. This framing undermines efforts to address the systemic barriers and inequities that people with disabilities face. It also perpetuates disparities by excluding disability status from the demographic framework used to measure, monitor, and address disparities across populations.

Including disability status within the Patient Demographics/Information data class aligns with best practices, which we have observed with our 50+ healthcare systems involved in the DEC Leaders Learning Community. It is also consistent with current development efforts by major EHR vendors, including Epic.

Finally, positioning disability as a Health Assessment data element rather than a Patient Demographic runs counter to the perspectives of the disability community itself. Disability is not just a matter of individual health—it is also a social and demographic identity that must be acknowledged in data, policy, and practice. People with disabilities must be fully included in these conversations and decisions. For these reasons, DEC strongly urges the adoption of PACIO’s proposal, which represents an essential step toward building a healthcare system that is equitable, accessible, and responsive to the needs and rights of people with disabilities.

Submitted by jpatterson@mitre.org on

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.

Submitted by rdillaire on

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.

Submitted by HCapon on

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. 

Submitted by nachcinformatics on

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. 

Submitted by nachcinformatics on

Comments on 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.

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