Submitted by PACIO-Project on 2022-09-29
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.
Submitted by firstname.lastname@example.org on 2022-09-30
AOTA comments on Disability StatusThe 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