Comments on Proposal for Development of Extended Measurement Sets

1. Comments on Proposal for Development of Extended Measurement Sets Jennifer Madans For Barbara M. Altman National Center for Health Statistics, U.S.

2. Compliments to the Authors • I’d like to acknowledge the authors for taking the time and making the effort to get their ideas down on paper to share with the group. • Further I’d like to not only acknowledge Marijke for her work, but to thank her for attempting a very difficult job. It is extremely difficult to get a disparate group organized to produce a product within a limited amount of time.

3. Looking for Clarification: Language • Except for the component of the paper which focuses on the relationship between the general and extended measures, the terminology is nonspecific. • Disability (the ICF umbrella term) is used throughout and contributes to the vagueness of what is being proposed. Particularly in the section on content of the extended sets, there is no differentiation that will help the reader to understand which component of disability model may be relevant. It prevents any translation into a measurement strategy

4. Looking for Clarification: Purpose • The purpose recommended in this paper seems to be the same as the purpose for the general measure without reflection on either of the other possible purposes of service provision and monitoring functioning or the development of other purposes more appropriate to extended surveys. • Is equalization of opportunity the only purpose for extended question sets or is it the first priority for development of extended sets?

5. Recommendations for Other Purposes to Consider • Equalization of opportunity and monitoring of functioning - Extended questions set/s could elaborate on basic areas of functioning to capture a larger part of the continuum of disability. • Service provision - Extended question sets could identify difficulties accomplishing tasks associated with self care and maintenance of independence.

6. Recommendations Continued: • Equalization of opportunity and service provision- Extended question set/s could capture access and environmental issues such as access to assistive devices and availability of transportation. • Equalization of opportunity - Extended questions could capture environmental characteristics. (Note: these questions would need to be asked of the total population not just those identified by some criteria as disabled)

7. Relationship Between Extended Question Sets and ICF • The proposal gives the impression of seeking to align the questions with the ICF rather than using the ICF as a tool to understand what measurement areas are necessary to fulfill the purpose of the measurement. • The purpose and design of the survey should dictate what components of the ICF are used as a tool to help locate those measures in the disability continuum. Instead the proposal seems to suggest that the work of this group is to implement the ICF components in measurement.

8. Relationship Between General and Extended Question Sets • Comments about screening imply the objective of the general questions is to identify as many people with a disability as possible. • The general measures recommended in the first position paper presented here did not take that approach, but rather sought to develop a reliable set of measures that would be culturally compatible with limited false positives. From that perspective, one very important function of extended data sets would be to identify the persons with other types of functional limitations who would not be easily identified with the general questions.

9. Final Comment • This proposal is oriented primarily to issues found in developed countries. It is highly probable that there is more of a split between developed and developing countries than is reflected here. • The perspective of developing countries (particularly areas associated with war and other political problems) must be included in our considerations.