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Workshop on Disability in America: A New Look - Summary and Background Papers (2006)
Board on Health Sciences Policy (HSP)

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. "Appendix K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes." Workshop on Disability in America: A New Look - Summary and Background Papers. Washington, DC: The National Academies Press, 2006.

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Workshop on Disability in america A new look: Summary and background papers
  • studying if there are long-term savings and costs related to paying for customized technology;

  • exploring whether strategies for the prevention of secondary conditions should accompany the delivery of various types of DME (e.g., whether, when wheeled mobility is prescribed, overweight and obesity prevention services and guidance on how to protect overused muscles and joints should be part of the service package);

  • determining if coverage for repairs to a device, as well for training regarding the use and maintenance of a device, extends the life of the device and reduces its replacement cost;

  • reducing the weight, size, and costs of devices and improving their ease of operation;

  • documenting whether there are any differences between the use of customized assistive technology and noncustomized assistive technology in long-term physical and financial costs; and

  • documenting or disproving the existence and scope of the “woodwork effect.”

Resistance to modernizing policies is often based on fear of the so-called woodwork effect. That is, if more generous benefits are available, unimaginable numbers of beneficiaries will emerge “from the woodwork” to seek the service. Is there any validity to the use of the woodwork effect by policy makers and insurance carriers as an excuse not to improve policy? Is this an excuse that actually costs more in the long run?

THE CHARGE TO IOM

For me and my peers, this updating of Disability in America by IOM is serious business. It is about “getting it right” in areas that are essential to our health and independence. It is about giving many of us the tools and services that we need to keep going, to be productive, and to prevent the world from unnecessarily closing in on us and becoming confining. It is about translating the words and the mantras like “quality living in the community” into reality. Life is short, so be productive and focus on converting the words to reality so that they do not remain empty promises.

REFERENCES

Brandt EN Jr., Pope AM, eds. 1997. Enabling America: Assessing theRole of Rehabilitation Science and Engineering. Washington, DC: National Academy Press.


Pope AM, Tarlov AR, eds. 1991. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academy Press.

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Front Matter (R1-R16)
Introduction (1-3)
Summary of Workshop Presentations and Discussions (4-38)
Appendix A Workshop Agenda and Participants (39-49)
Appendix B Conceptual Models of Disability: Past, Present, and Future--Gale Whiteneck (50-66)
Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson (67-87)
Appendix D How Does the Environment Influence Disability? Examining the Evidence--Julie J. Keysor (88-100)
Appendix E Late-Life Disability Trends: An Overview of Current Evidence--Vicki A. Freedman (101-112)
Appendix F Chronic Disease and Trends in Severe Disability in Working-Age Populations--Jay Bhattacharya, Kavita Choudhry, and Darius Lakdawalla (113-142)
Appendix G Trends in Disability in Early Life--Ruth E. K. Stein (143-156)
Appendix H Aspects of Disability Across the Life Span: Risk Factors for Disability in Late Life--Jack M. Guralnik (157-165)
Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson (166-184)
Appendix J Secondary Conditions and Disability--Margaret A. Turk (185-193)
Appendix K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes (194-204)
Appendix L Impact of Exercise on Targeted Secondary Conditions--James H. Rimmer and Swati S. Shenoy (205-221)
Appendix M Secondary Conditions with Spinal Cord Injury--William A. Bauman (222-233)
Appendix N Depression as a Secondary Condition in People with Disabilities-Bryan Kemp (234-250)
Appendix O Promoting Health and Preventing Secondary Conditions Among Adults with Developmental Disabilities--Tom Seekins, Meg Traci, Donna Bainbridge, Kathy Humphries, Nancy Cunningham, Rod Brod, and James Sherman (251-264)
Appendix P Biographical Sketches of Workshop Committee and Workshop Presenters (265-276)