The Institute of Medicine (IOM) and the National Research Council (NRC) have had prominent roles in discussions of aging, disability, and technology for decades. In 1978, Aging and Medical Education (IOM, 1978) raised national awareness of the challenges to physicians posed by the aging of the U.S. population. Thirty years later, Retooling for an Aging America (IOM, 2008) highlighted concerns for the entire health care workforce in view of the aging of the population, including the role of technology in caring for older populations. The 1988 report The Aging Population in the 21st Century (NRC, 1988) examined social, economic, and demographic changes among older adults, as well as many health-related topics: health promotion and disease prevention; quality of life; health care system financing and use; and the quality of care—especially long-term care. In 1991, the landmark report Disability in America (IOM, 1991) laid out a national agenda to prevent disability and improve the lives of people with disabling conditions. The 1997 report Enabling America: Assessing the Role of Rehabilitation Science and Engineering (IOM, 1997) examined the knowledge base of rehabilitation science and engineering and proposed ways to translate scientific findings into interventions that produce better health. And the 2007 report The Future of Disability in America
1 The planning committee’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the Institute of Medicine or the National Research Council, and they should not be construed as reflecting any group consensus.
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1 Introduction and Themes of the Workshop1 T he Institute of Medicine (IOM) and the National Research Council (NRC) have had prominent roles in discussions of aging, disability, and technology for decades. In 1978, Aging and Medical Education (IOM, 1978) raised national awareness of the challenges to physicians posed by the aging of the U.S. population. Thirty years later, Retooling for an Aging America (IOM, 2008) highlighted concerns for the entire health care workforce in view of the aging of the population, including the role of technology in caring for older populations. The 1988 report The Aging Population in the 21st Century (NRC, 1988) examined social, economic, and demographic changes among older adults, as well as many health- related topics: health promotion and disease prevention; quality of life; health care system financing and use; and the quality of care—especially long-term care. In 1991, the landmark report Disability in America (IOM, 1991) laid out a national agenda to prevent disability and improve the lives of people with disabling conditions. The 1997 report Enabling America: Assessing the Role of Rehabilitation Science and Engineering (IOM, 1997) examined the knowledge base of rehabilitation science and engineering and proposed ways to translate scientific findings into interventions that pro- duce better health. And the 2007 report The Future of Disability in America 1 The planning committee’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the Institute of Medicine or the National Research Council, and they should not be construed as reflecting any group consensus. 1
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2 FOSTERING INDEPENDENCE, PARTICIPATION, AND HEALTHY AGING (IOM, 2007, p. 10) examined progress made since the earlier reports and looked at continuing barriers that limit the independence, productivity, and participation in community life of people with disabilities, concluding that “disability is not an unavoidable consequence of injury and chronic disease but is substantially affected by the actions that society takes.” All these reports were produced by committees appointed in accordance with guidelines of the National Academies and met multiples times to com- pile and review evidence, reach consensus on conclusions and recommenda- tions, draft a report of the committee, and then modify that draft report in response to comments from outside reviewers. The IOM and NRC have also held several workshops related to aging, disability, and technology and published summary reports, such as Technology for Adaptive Aging (NRC, 2004) and Grand Challenges of Our Aging Society (NRC, 2010). The IOM and NRC also convene groups that take a different approach to issues of pressing national and international importance. Often known as forums or roundtables, these groups meet regularly to foster dialogue and confront issues of mutual interest and concern among a broad range of stakeholders. They can convene workshops, initiate cooperative projects among members, commission independently authored articles, and generate ideas for independent consensus studies. In 2012 the IOM and NRC joined together to establish the Forum on Aging, Disability, and Independence to provide a neutral venue for broad- ranging discussions among the many stakeholders involved with aging and disability.2 The goals of the forum are to highlight areas in which the coor- dination of the aging and disability networks is strong, examine the chal- lenges involved in aligning the aging and disability networks, explore new approaches for resolving problem areas, elevate the visibility and broaden the perspectives of stakeholders, and set the stage for future policy actions. Forum sponsors and members include federal agencies, health professional associations, private sector businesses, academics, and consumers. WORKSHOP STATEMENT OF TASK The summary of the 1991 report Disability in America (IOM, 1991) stated the following: Disability is the expression of a physical or mental limitation in a social context—the gap between a person’s capabilities and the demands of the environment. People with such functional limitations are not inherently disabled, that is, incapable of carrying out their personal, familial, and social responsibilities. It is the interaction of their physical or mental limi- tations with social and environmental factors that determines whether they 2 The forum website is www.iom.edu/ADIForum.
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INTRODUCTION AND THEMES OF THE WORKSHOP 3 have a disability. Most disability is thus preventable, which will not only significantly improve the quality of life for millions of Americans but also could save many billions of dollars in costs resulting from dependence, lost productivity, and medical care. An increasingly important aspect of the “social and environmental fac- tors” that determine whether an individual has a disability is the technology to which that person has access. Technology-driven assistive and adaptive products have improved functioning and quality of life for people of all ages. Furthermore, the potential of technology remains immense to increase the number of disability-free years in the average life span. To explore this potential, the Forum on Aging, Disability, and Indepen- dence, as its first formal public activity, held a workshop in Washington, DC, on December 19, 2012, titled Fostering Independence, Participation, and Healthy Aging Through Technology. More than 100 people attended the workshop, and more than 100 remote participants registered to watch the workshop on a simultaneous webcast.3 Box 1-1 lists the workshop statement of task. Overall, workshop speakers were asked to meet the following objectives: • Focus on adults who by virtue of an inherited/congenital condi- tion, accident, or disease(s) become impaired in their ability to be as independent as possible as they age. • Provide an overview on how the independence, community integra- tion, and well-being of these individuals can be improved through access to and increased use of technology. • Examine existing and emerging technologies, with a focus on tech- nologies most likely to be employed. • Discuss barriers to deployment and adoption of technologies and reasons for abandonment of technologies already in use. ORGANIZATION OF THE WORKSHOP SUMMARY This summary of the workshop describes the presentations of the speakers and compiles the comments made by workshop participants and speakers in the rich discussions that followed the talks. Chapter 2 examines several past and ongoing initiatives as examples of the tremendous potential that technology has to restore functional capacity and avert deterioration in functioning. Chapter 3 focuses more specifically on the use of technologies to promote activities of daily living and independence. Chapter 4 looks at 3 The archived webcast is available at http://www.iom.edu/Activities/Aging/AgingDisability Forum/2012-DEC-19.aspx.
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4 FOSTERING INDEPENDENCE, PARTICIPATION, AND HEALTHY AGING BOX 1-1 Workshop Statement of Task An ad hoc planning committee will plan a 1-day public workshop to examine the ways in which technology can foster independence and healthy aging among working-age individuals with disabilities and among individuals who are develop- ing disabilities as they age. The workshop will feature invited presentations and discussions that will • provide an overview on how the independence, community integration, and well-being of older adults and individuals with disabilities can be improved through the increased use of and access to technology; • examine existing and emerging technologies, with a focus on technolo- gies most likely to be employed (“straddling promise and reality”); and • discuss barriers to deployment and adoption (and abandonment) of technologies. The planning committee will develop the agenda for the workshop, select and invite speakers and discussants, commission any papers in advance of the workshop, and moderate or identify moderators for the discussions. A single in- dividually authored summary of the workshop will be prepared by a designated rapporteur based on the information gathered and the discussions held during the workshop. how technologies can promote community integration and participation in the context of community design, and Chapter 5 examines community integration and participation from the perspective of social connectedness. Chapter 6 investigates how technologies can help manage and promote health. Chapter 7 summarizes comments made during the discussion ses- sions as a way of revisiting the major issues raised at the workshop. The workshop agenda and biographical sketches of the speakers appear in Ap- pendixes A and B, respectively. THEMES OF THE WORKSHOP Over the course of the workshop, speakers raised several prominent ideas that structured both their presentations and the subsequent discus- sions. These ideas are presented here as an introduction to the themes of the workshop, with the speaker who discussed the idea identified in paren- theses. These themes should not be seen as conclusions of the workshop as a whole or as recommendations of the workshop participants; the Forum on Aging, Disability, and Independence; or the IOM or NRC.
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INTRODUCTION AND THEMES OF THE WORKSHOP 5 The Challenge • High technology is not necessarily the answer to every problem. Relatively simple technologies are needed to solve common but extremely complex problems, such as going to the bathroom or getting out of bed. (Fernie) • Many excellent technologies are not widely used for a variety of reasons, including inadequate reimbursement, insufficient funding for translational research and technology, and a lack of collabo- ration and training among technology developers and providers. (Cooper) • Because families are smaller today than in the past, fewer children are present to care for parents, and many of them live farther away and have jobs. (Coughlin) • Until technologies that are obvious, easy, relatively affordable, and sensible are widely available, the market will have failed the people who could benefit from those devices. (Coughlin) • Interoperability and interconnectivity of different technologies, such as between health care systems and devices, are necessary to facilitate the exchange of information and to ensure the continuity of information and care especially for individuals who receive care from, or transition between, multiple care provider organizations. (Alwan) The Promise • The convergence of aging and disability has created an eco- nomic and political opportunity to rewrite the narrative of aging. (Coughlin) • Technology can both prevent disabilities and provide people who have limitations with as much mobility and freedom as possible. (Fernie) • Technologies can make life possible for individuals with diseases that in the past would have ended their lives. (Saling) • Universal design, in which all homes include the features needed to accommodate limitations, can benefit everyone who lives in or visits those homes. (Cooper) • More accessible and useful transportation can meet the needs of people with disabilities and could have widespread benefits for all travelers. (Yousuf) • Workplace accommodations are about more than the performance of work tasks; they also can create participation in the workplace
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6 FOSTERING INDEPENDENCE, PARTICIPATION, AND HEALTHY AGING that leads to a sense of belonging, inclusion, and recognition that work is adding value to the organization. (Sanford) • Maintaining accessibility across all Web environments is essen- tial for healthy aging, whether someone has a disability or not. (Brewer) • The Web will not be usable and available to all people without de- voting effort to accessibility initiatives that shape the shared public infrastructure. (Lewis) • Monitoring health conditions among older people using newer methods of biomonitoring can improve health but still faces tech- nological and cultural barriers. (Agostini) • Technological advances, motivational influences on behavior, and cultural change among individuals and in communities are enhanc- ing the capacity of rehabilitation science to forestall the onset of disability. (Winstein) • When automated interactions between the health care system and patients more closely emulate human-to-human interaction, they can better promote accessibility, engagement, adherence, and reten- tion. (Bickmore) • The best way to develop successful technologies is to have individu- als with cognitive and developmental disabilities using the technol- ogy in their homes and communities. This will help to figure out what is most effective and to determine where changes are needed. (Wellems) • Strategic partnership among acute, postacute, and long-term ser- vices and supports could make the widespread adoption of technol- ogy a reality. (Alwan)