ODDC- Measurement Issues from the Lifespan Conference, July 21, 2003

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TITLE: Measurement Issues from the Lifespan Conference, July 21, 2003

Speakers: Stephen M. Haley, Ph.D., Director of the Center of Disability Effectiveness, Boston University; Barbara Altman, Centers for Disease Control and Prevention; James Rimmer, University of Illinois; Margaret Stineman, University of Pennsylvania; and Thomas W. Hale, Ph.D. economist, U.S. Department of Labor (Katherine Cargill-Willis 8/10/04)

Kathy’s Note: This summary attempts to report on a series of PowerPoint presentations. Unfortunately, it is very sketchy and there is no background information to fill in the paper. The underlying theme appears to be that there is a need for universal definitions and tools to measure ‘disability’ and ‘employment’.

The Lack of Disability Measurements: The Current Population Survey (CPS) demonstrates that the employment has decreased for people with disabilities during the 1990’s, while general employment increased at the same time. CPS uses both the basic CPS and the CPS income supplement to measure employment trends among persons with disabilities. Neither measurement gives an accurate picture of the employment trends of people with disabilities. The basic CPS is not able to identify employed and unemployed persons with disabilities and it cannot fully measure the extent of disability among the "not in labor force" group. The CPS income supplement inquires about health problems that prevent you or someone in your household from working or limits the kind of work you can do. This question identifies some people with disabilities but it also may identify people with temporary illnesses or broken bones. These unverifiable questions led to elements of uncertainty including:

A temporal element-how long must a health problem or impairment last before it is ‘disabling’?
How people view their work and their disability. Some people who work and have a disability would not consider themselves limited in the type or amount of work they can do, so they would not identify themselves as being disabled. Conversely some people working in a job that they believe to be significantly below their capabilities, might say they are limited in the type of work they can do.
Certain people with specific types of disabilities do not self identify unless asked about the disabilities directly.

Working under the auspices of Executive Order 13078, and in conjunction with the Presidential Task Force on the Employment of Adults with Disabilities and more than 15 other Federal agencies, a set of questions has been identified and is being tested for possible inclusion in the CPS. The Executive Order requires that measures of individuals with disabilities be accurate and reliable.

Policy Implications:

An unified system to measure disability across post-acute care settings, improve monitoring of care and encourage more widespread use of functional data.
Improved disability measures could be pivotal in future development and testing of clinical and public health interventions for prevention and treatment.
Conceptual and measurement work on disability is critical to help design better strategies for long-term care of an aging population.
Chronic, potentially disabling conditions are common in this population, thus continuous monitoring of management programs could be enhanced by improved disability measures.

Other Disability Measures and Models:

International Classification of Functioning: is an umbrella term for impairments, activity limitations and participation restrictions, denoting negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors, environmental and personal factors.
IOM Model: Measures the gap between a person’s capabilities and the demands of the environment.
NAGI Model Definition: Examines the pattern of behavior that evolves in situations of long term or continued impairments that are associated with functional limitations.
Social Model Definition: Measures the limit or loss of opportunities that are available in community life because of physical and social barriers.
The Health Environmental Integration (HEI): a potential framework that unifies and expands the biomedical model and reconciles the differences and similarities among various other models. The HEI quantity includes external life space, the physical environment accessible to the individual at any point in time given his or her mental or physical capacities or impairments.

Differences Between Clinical and Survey Measurement: There are differences between clinical and survey measurements based on the context in which the term ‘disability’ is used; pathology (a biophysical condition that can lead to a disability); impairments; functional limitations; or task and activity limitations.

Data Collection: Depending on the purpose of the data, several definitions, variables and methods need to be chosen before the survey can be written or administered, including:

Should there be different kinds of questions or yes and no?
What definition of ‘disability’ is going to be used?
What role do assistive devices play in measurement? If the device makes functioning near normal is it captured?
Is it sufficient to capture physical functioning in a mechanical way? What role does pain, stamina, and fatigue play in disability measurement?

Respondent:

How does the respondent see him or herself and his or her disability?
Do they think of themselves separate from their disability?
Can they identify barriers in their lives?

Proxy Respondent:

How does a relative think about the disability?
What is the impact of age or gender relationship between the person and the respondent?
Can a proxy know barriers?
What is the proxy reference point?
What is the effect of the emotional relationship between the person and the proxy?
How does the level of dependency influence the proxy response?

Measuring the Accessibility of Fitness and Recreation Environments: The significant lower rate of participation in physical activity among people with disabilities may be related to environmental barriers, architectural barriers, organizational policies and practices, discrimination, and social attitudes. Although there are no valid and reliable instruments to measure accessibility in fitness and recreation environments, checklists have been developed to access the accessibility of certain buildings. While most buildings are generally accessible, embedded within each of these buildings may be items that are setting-specific and inaccessible, for example a swimming pool. Measurement instrument also must offer professionals and staff enough information to make the environment accessible in a cost-effective manner.

Gaps in Knowledge:

Recent work suggests that activity and participation domains may be distinguishable.
A recent comparison of functional status tools in post-acute shows limitation in range of content, breadth of content coverage and measurement precision of existing instruments.
Many efforts to link existing disability instruments together using translations have not been successful.
Current instruments carry a high response burden for practitioners and individuals. It is necessary to have a lot of items to cover function across individuals, but do all the items need to be administered to each person?
How physical barriers reduce external life space
How stigmatizing social attitudes influence internal life space
Understanding the tension between outcomes feasibility and desirability
Responsibilities of individual rehabilitation programs versus those of society

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