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.

CMS-CCSQ/CDC Joint Support for Disability Status for USCDI v5

CMS, along with the PACIO Project and CDC, also repeats the recommendation to move the Disability Status data element from the Health Status Assessments data class to the Patient Demographics/Information data class. The rationale being that identifying a person with a disability does not necessarily have any bearing on how healthy a person is or the status of one’s health.

CMS-CCSQ/CDC Joint USCDIv4 Priority: Disability Status

CDC and CMS recommend moving the current Disability Status data element from the Health Status Assessments data class to the Patient Demographics data class.

Federal consideration of disability data as demographic has precedent. For example, the data collection standards established by the ACA include disability alongside many variables already included in the Patient Demographics data class, such as race, ethnicity, and sex, and by extension disability can be used when using demographic factors for stratification for equity.

Collecting and transmitting data on disability in a standardized way alongside other demographic factors 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.

CMS may additionally recommend a disability assessment data element in version 5 to qualify the disability type (e.g. functional, cognitive, physical, etc.).

PACIO Project Recommends Change to Disability Status

• Data Class: Health Status Assessments (Draft V4) 

• Data Elements: Functional Status, Mental/Cognitive Status, Disability Status (Draft V4)  

• 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 CMS and CDC submission, which reflect their view that identifying a person with a disability does not necessarily have any bearing on how healthy a person is or the status of one’s health. However, collecting and transmitting data on disability in a standardized way alongside other demographic factors 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 Project Recommends Value Set Adoption

• Data Class: Health Status Assessments (Draft V4) 

• Data Elements: Functional Status, Mental/Cognitive Status, Disability Status (Draft V4) 

• Recommendation: Adopt the value sets developed for the “Personal Functioning and Engagement” IG as part of the USCDI V3 updates to the U.S. Core IG to incorporate Functional Status and Cognitive Status data elements. 

• 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. Functional and Mental/Cognitive Status are important data classes that have widespread use in all healthcare settings and sharing the content of standardized PAC assessments (some of which are federally required) with non-PAC providers (e.g., hospitals, physicians) would improve the quality of care and facilitate care coordination during transitions of care. These instruments use a consistent framework mapped to HIT standards for functional status, contain administrative and clinical patient data, can be considered as individual data elements (mobility, pressure ulcer, transportation, social isolation, etc.) or a “questionnaire” of grouped data elements together (MDS, OASIS, IRFPAI, FASI etc.) The PACIO Community wishes to update the ONC/USCDI with current efforts relating to several of the data elements under the proposed USCDI V4 data class of Health Status (Health Concerns, Functional Status, Disability Status, and Mental/Cognitive Status). The PACIO Community recognized the value of creating data models (like Gravity’s SDOH) that allow for expansion across multiple domains. As a result, PACIO created a new FHIR Implementation Guide (IG), “Personal Functioning and Engagement,” which consolidates PACIO’s prior published IGs (STU1) “Cognitive Status” and “Functional Status”. The PACIO group also is incorporating data elements of communication, swallowing, and hearing to the “Personal Functioning and Engagement” IG currently under development. Currently, the Personal Functioning and Engagement IG data structures focus on observation/ assessment data. However, the IG could include future expansion using additional resources as the work matures. The concept of “Personal Functioning and Engagement” encompasses both an individual’s abilities (positive strengths) and disabilities (impairments) across all types of functioning. The PACIO Community examined and incorporated the International Classification of Functioning, Disability and Health (ICF) as a conceptual framework that underpins this new PACIO Personal Functioning and Engagement IG. PACIO’s current work focuses on ICF “Body Functions” including mental functions, sensory functions (including hearing), voice and speech functions, and ingestion functions (swallowing). Current PACIO focus for ICF “Activities and Participation” functions include Learning and Applying Knowledge, Communication, Mobility, and Self-care.  

AOTA comments on Disability Status

The American Occupational Therapy Association (AOTA) agrees with CDC’s comment and echoes the sentiment that because a person has a disability, it does not mean they are not functional. If the disability status data element is intended to capture specific disability status, this should be clarified. The examples provided under disability status appear to be more in alignment with the functional data elements. Per the documentation, functional status is intended to capture an individual’s risks of development or worsening of a condition or problem. However, it is important for USCDI to recognize that disability status may not be static and often fluctuates depending on the condition and may also be progressive. If this data element is intended to capture if a patient has a disability or to identify if the patient is able to make their own medical decisions, then this may be better as a data element under patient demographics vs health status.  

USCDI 2022 Comments 9.22.pdf

PACIO Comments on Disability Status

• The PACIO Community requests ONC clarify what is meant by “Disability Status” and how it relates to the separate data element of “Functional Status.” The existing definition does not describe the current conceptualization of disability. Recent literature suggests that functioning and disability is a complex interaction between a person, their health condition, personal factors (e.g. age lifestyle), and the environment. This concept is delineated in the International Classification of Functioning, Disability and Health (ICF) (https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health). As a classification, ICF systematically groups different domains for a person in a given health condition (e.g., what a person with a disease or disorder does do or can do). Functioning is an umbrella term encompassing all body functions, activities and participation; similarly, disability serves as an umbrella term for impairments, activity limitations or participation restrictions. ICF also lists environmental factors that interact with all these constructs. In this way, it enables the user to record useful profiles of individuals’ functioning, disability and health in various domains. The association between the person and the contextual factors, defined as personal and environmental factors in the ICF, provides a clearer understanding of a person’s functioning and disability. Disability status considers the negative aspect of the interrelationship. For example, an individual with a health condition could be considered disabled in one environment (structural barriers exist in the community restricting a person in a wheelchair from moving outside one’s home) but not in another (accessible streets and housing allow a person in a wheelchair to go to work and community-based activities). The current definition of disability status assumes that only an assessment of physical, cognitive, intellectual, and psychiatric disabilities is required. Disability could be interpreted as part of Functional Status, whereby functioning indicates capability in a given area and poor functioning could be described as disability in that area (e.g., capability to ambulate vs. inability to ambulate). Disability often manifests on a continuum and the level of disability may depend upon certain environmental variables, such as access to assistive devices or technologies. In addition, disability may be permanent or temporary (e.g., functional abilities may decline after a stroke or a surgical procedure, but then improve with time and therapeutic interventions). If for the purposes of USCDI, ONC intends for Disability Status to represent a more binary concept of permanently disabled or not disabled, as determined by qualification for federal disability benefits, for example, the PACIO Community requests more explicit guidance to this effect.
  • The PACIO Community recommends that disability status be defined as an assessment (self, familial or practitioner assessment) that measures the relationship between a person, their health condition, personal factors, and the environment. Assessments can be identified that fit into the disability assessment category. Alternatively, the definition can be simplified to a designation of disability benefits awarded by a governmental or regulatory agency may be included.

CDC's comment on behalf of CSTE for USCDI v4

CSTE agrees with CDC's recommendation for this data element USCDI v4. 

CDC's Consolidated Comment for USCDI v4

 We recommend moving the Disability Status data element from the Health Status data class to the Patient Demographics data class; identifying as a person with a disability does not necessarily have any bearing on how healthy a person is considered to be or the status of one’s health. Disability status is important to assess on a routine basis as it can be chronic or newly-evident due to illness or injury, and up to 1 in 4 adults report functional disability. Disability status places individuals as part of a group and as members of a minority sometimes subjected to marginalization, prejudice or discrimination. The federal consideration of disability data as demographic has precedent.  For example, the social security administration categorizes its research, statistics, and policy analyses by demographics, including by disability status.   In addition, the data collection standards established by the ACA include disability alongside many variables already included in the Patient Demographics data class, such as race, ethnicity, and sex.  Recognizing disability as a demographic variable can help public health professionals to specifically tailor health interventions with the goal of helping people with disabilities achieve health equity.  Collecting and transmitting data on disability in a standardized way alongside other demographic factors 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.   

AOTA's Comments on Disability Status

The American Occupational Therapy Association (AOTA) supports more consistent collection of disability status. AOTA supports its inclusion in the Health Status class as disability status may fluctuate between and during episodes of care.  Disability status is captured consistently by occupational therapy practitioners through assessment and intervention. AOTA encourages USCDI to consider how data from occupational therapy practitioners can be utilized in this data class. 

We encourage USCDI to also consider how this data can be patient reported to capture the individual’s interpretation of their disability status and identify inconsistencies in reporting. Utilizing self-reported and clinician reported data will provide a more comprehensive picture of the patient's disability status.  

2022 USCID Final Comments_1.pdf