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Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary (2016)

Chapter: 2 The Importance of Community Living and Maximizing Independence to Individuals and Society

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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
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2

The Importance of Community Living and Maximizing Independence to Individuals and Society

To provide a framework for the workshop’s discussions, two keynote speakers talked about what maximizing independence and community living mean, the successes that have already been achieved, the challenges that lie ahead, and suggestions for how to meet those challenges. Kathy Greenlee, the Administrator of the Administration for Community Living (ACL) and the Assistant Secretary for Aging in the U.S. Department of Health and Human Services (HHS), gave a keynote presentation on the history and current state of the federal government’s efforts to support community living and independence. Gretchen Alkema, the Vice President for Policy and Communications at The SCAN Foundation, then discussed the contrast between how Americans perceive issues of aging, disability, and independence and the realities of these issues.

FEDERAL EFFORTS TO SUPPORT COMMUNITY LIVING AND INDEPENDENCE

Kathy Greenlee
Administrator, Administration for Community Living
Assistant Secretary for Aging,
U.S. Department of Health and Human Services

Kathy Greenlee of ACL and HHS began her presentation by recounting how when she first began working as the Assistant Secretary for Aging in 2009, HHS was putting together working groups to prepare for what

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

would eventually become known as the Patient Protection and Affordable Care Act1 (ACA). She recalled how she and Henry Claypool, who was then Secretary Kathleen Sebelius’s advisor on disability policy, would receive the lists of those who were to be members of the working groups, and neither one of them would be included. “That was troubling to us and also an early warning that health [care] reform was not long-term care reform,” Greenlee said. Although long-term care reform is occurring, she added, it was not organized that way, nor was there recognition of the connection to community-based work on aging and disability. It was for this reason that Greenlee, Claypool, and Sharon Lewis—then the Administrator of the Administration on Intellectual and Developmental Disabilities—worked to create ACL. They envisioned ACL as the agency at HHS where the voices of older adults and people with disabilities would be heard in the health reform conversations.

As the Obama Administration comes to a close, Greenlee and her colleagues at HHS have been working on a proposed budget for 2017. Even though the budget is unlikely to be passed by Congress before the next Presidential election, Greenlee said she and her colleagues have decided to use this budget-planning time as an opportunity to educate as many people as possible within the federal government about the need to integrate community living and community-based supports with programs that provide long-term services and supports (LTSS) and acute care for older adults and people with disabilities. One question the Office of Management and Budget has asked was why the Centers for Medicare & Medicaid Services (CMS) is not doing this work. This question demonstrates how many people incorrectly assume that CMS oversees all things related to aging and disability—in fact, it does not—and it highlights the need to continue to educate both those inside and outside of the federal government on the importance of developing policies and providing funding to integrate services in a way that supports community living and independence.

CMS, Greenlee explained, interfaces with state Medicaid agencies, which are essentially insurance finance companies and not program agencies. Although some at CMS know what work ACL does at the community level, those involved with Medicare or the Center for Medicare & Medicaid Innovation generally do not. What is disheartening, although not surprising, Greenlee said, is that 6 years into the era of health care reform there is still a disconnect between the need to have community-based services so older adults and those with disabilities can stay in their

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1 Patient Protection and Affordable Care Act, Public Law 111-148, 111th Cong., 2nd sess. (March 23, 2010).

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

homes and the need to have federal health care policies to enable and support the delivery of those services.

Over the past 6 years, Greenlee and her colleagues have made what she called tremendous progress on individual pieces of this problem and on demonstrating what is possible when the right policies and funding are in place. States are beginning to replicate some of the demonstration programs that ACL has funded, and researchers are starting to develop approaches for integrating these individual pieces into a long-term care strategy. One big issue still remaining, Greenlee said, is how to reform long-term care financing and preserve the value base of community-based services.

Two specific areas in which ACL and its partners have made what Greenlee characterized as significant strides forward are in business acumen and in the coordination of LTSS.

Business Acumen

The ACL Business Acumen Learning Collaborative2 is a community-level effort to improve the business acumen of the organizations and agencies that provide community-based services. Greenlee noted the tremendous support that The John A. Hartford Foundation and The SCAN Foundation have given as ACL has worked to change the network of services it supports and to make previously free services more sustainable in an uncertain funding climate. “We are taking a national network of nonprofits—the area agencies on aging [and the] centers for independent living—and changing their fundamental business structure,” Greenlee said. “Not their mission, not their value[s], not their contribution[s], [but] their structure.” These are primarily grant-based organizations that receive money from the federal government via the states and the Older Americans Act, she explained. They are learning to become providers, to demonstrate their economic value, and to bill for their services. Possible opportunities include establishing meal providers that hospitals can contract with to deliver meals to the home of someone recently released from the hospital. Other services that might be able to generate fees rather than subsist on grants include community-based transportation networks and case management. There is still a role for services that are provided free of charge, Greenlee said. The challenge is that there is an assumption that all of the free community services are plentiful and will continue to be available for the clients of large long-term care providers, managed-care organizations, and hospital systems, even in an uncertain funding climate.

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2 For more information, see http://www.acl.gov/Programs/CIP/OICI/BusinessAcumen/index.aspx (accessed January 28, 2016).

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

Coordination of LTSS

The other significant stride forward that ACL has made, with strong support from CMS and the U.S. Department of Veterans Affairs, is a state-level effort to help improve the coordination of LTSS. ACL has taken the core principles of what CMS has done with its “no wrong door” approach for beneficiaries to gain access to CMS services and is working to extend a similar model to the entire range of aging and disability services. One goal of this work, Greenlee said, is to bring all potential beneficiaries to the table—not just those who have spent down all of their savings, but also those who still have savings and who, with some assistance, might be able to avoid spending down their savings and having to enroll in Medicaid to pay for their LTSS needs. She cited the collaboration between the Partners in Care Foundation and Blue Shield of California as one example of how states are designing programs so that they can provide a modest amount of help to individuals earlier, which may delay or prevent individuals from ever needing to enter the Medicaid system.

Key Issues for Moving Forward

During the course of ACL’s work on improving business acumen and the coordination of LTSS, four key issues have emerged that should be kept in mind as this work moves forward, Greenlee said. The first is a focus on quality and quality outcomes. “If we monetize [services], people will have to know that they are buying something that has an outcome that they want,” she said. “I am convinced that this particular pathway will secure the future of community-based organizations once they can prove it.” For example, quantifying the value of providing home-delivered meals as a form of health support after a hospital discharge would require research demonstrating the associated positive health outcomes and health care savings. However, she said, focusing on quality outcomes is hard for the aging services network because of its historic emphasis on outputs, not outcomes. For example, when ACL instituted a requirement that states and area agencies could only spend Older Americans Act funds on evidence-based programs, there was some resistance. This requirement was a signal that an exercise program at a senior center could not be created just because someone volunteered to run it. The exercise program must have fidelity and be replicated with outcomes that are proven, Greenlee explained. Toward this end, HHS has asked the National Quality Forum (NQF) to identify the domains needed for quality measures of LTSS. NQF has already identified person-centeredness as one of the necessary domains. The next step, Greenlee said, is to invest in research to populate these domains with data. Although some data are

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

available at the local level, the research for home- and community-based services needs to be taken to a much larger scale.

The second key issue is to continue the conversation about delivery system reform. Greenlee said that much of the discussion has been about delivery system payment reform and has focused on how doctors and hospitals are paid. However, delivery system reform goes beyond the boundaries of the hospital system to include how community-based services are delivered.

The third key issue relates to technology and, in particular, the development of interoperable electronic health record (EHR) systems. Greenlee pointed to research on care transitions, funded by the Center for Medicare and Medicaid Innovation, as evidence that the lack of access that community-based organizations have to EHRs is a fundamental barrier to these organizations successfully moving forward. In some cases local organizations, such as the Area Agency on Aging in San Diego County—an aging and disability resource center—have gone so far as to build their own systems to interface with regional hospitals. And yet, “no one is investing in this. This is not part of meaningful use proposals for this country. It’s not part of what the Office of the National Coordinator does,” said Greenlee. “Technology will keep the aging network and disability programs and local communities . . . at the starting gate if we don’t talk about it, because no one is investing in [it],” said Greenlee.

The fourth key issue, Greenlee said, is basic education about the disconnects, the opportunities, and the good, effective work that is already taking place in home- and community-based services. “Where is the academic world? Where is the policy and research world? Is anyone writing about this?” asked Greenlee. She asked the workshop audience to continue to increase the visibility of these topics because “if this is only an internal conversation within the federal government, we can’t solve the connectivity that we are all looking for.”

AMERICAN PERCEPTIONS AND THE REALITIES OF AGING, DISABILITY, AND INDEPENDENCE

Gretchen Alkema
Vice President of Policy and Communications, The SCAN Foundation

How Americans think about aging and disability matters, Gretchen Alkema of The SCAN Foundation told the workshop audience. It affects the conversations that those working in the field have with each other, with policy makers at the state and local levels, and with the general public. It also affects how the media portray the issue. All of this led Alkema to question what should be done to bring the issues of aging,

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

disability, and independence out of the recesses of people’s minds and out of the bedroom conversations of “What are we going to do about mom?” and into the open to start generating change in the United States. Although Americans are beginning to recognize that these issues are part of their lives, they are still not entirely clear about what actions to take, and they sometimes wonder whether anyone else is struggling with the same challenges.

Since 2013, The SCAN Foundation, which is interested in aging and dignity with independence, has commissioned the Associated Press–NORC Center for Public Affairs Research to conduct an annual poll of more than 1,700 individuals who are 40 years of age or older to examine Americans’ awareness and perceptions of aging and long-term care.3,4 According to the 2015 poll, 47 percent of those surveyed believe it not too likely or not very likely that they have an aging family member or close friend who will need any level of ongoing living assistance in the next 5 years, a perception that Alkema characterized as not being based on reality. Even more surprising, she said, is that the percentage of poll respondents who held this belief increased substantially between the 2013 poll and the 2015 poll. One possible reason for this concerning trend, she suggested, is that it is driven by those who are 40 to 45 years old and are just beginning to experience the consequences of aging in their own families. Another possible reason, based on anecdotal observations from other health-related polls, is that these results have been affected by the economic recovery in the United States. Regardless of the reason, Alkema said, these results represent an enormous problem regarding Americans’ awareness of the impending impact of an aging population.

Given these results, it was not surprising that the poll found that only 28 percent of Americans are very prepared or extremely prepared to help their loved ones. For the approximately half of those polled who were somewhat prepared to help their loved ones, many reported that their preparation might have consisted only of a conversation about funeral planning or other related end-of-life decisions.

The survey also found that approximately 76 percent of respondents said it was not at all likely, not too likely, or only somewhat likely that they themselves would ever need assistance. A 2015 brief from the Office of the Assistant Secretary for Planning and Evaluation (ASPE) at HHS

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3 Results from each year of the poll can be found at longtermcarepoll.org (accessed January 30, 2016).

4 Alkema noted that the poll uses the phrase “ongoing living assistance” rather than “long-term care” or “long-term services and supports.” For the purposes of the poll, “ongoing living assistance” was defined as help with tasks such as shopping, transportation, meal preparation, or money management. Activities of daily living were not included in this definition.

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

showed a different reality: The brief projected that approximately 52 percent of adults ages 65 years and older will have a severe long-term care5 need at some point in their lives, where “severe” means having impairment in two or more activities of daily living (ADLs)6 or severe cognitive impairment (Favreault and Dey, 2015). These two studies demonstrate a stark contrast between what the American population thinks and what the reality is. Furthermore, the care needed by 52 percent of the population who reach age 65 will have a tremendous cost. The ASPE brief included projections that the average individual lifetime care cost for the 52 percent of individuals with severe needs will be approximately $138,000 each. This amount is based on the cost of care in 2015, not on a future cost that accounts for inflation. Importantly, this cost does not include the cost of housing, food, clothing, or any other basic needs. These data underscore the importance of building a long-term services delivery system capable of meeting these projected demands through partnerships between community-based organizations and the health care delivery system. Alkema noted that these data are for individuals ages 65 years and older because there are very few, if any, data available for those under 65 years of age or those who have disabilities. She said this is a serious deficiency and an area in much need of research.

In summarizing her presentation, Alkema said that she disagreed with the metaphor many use of describing the United States as facing a tsunami of need, both for aging adults and those with disabilities. “I don’t actually believe it’s a tsunami at all because people don’t experience it that way. People experience it as their own personal crisis,” she said. “I would offer that . . . it’s really a set of personal realignments when the myth of our life and the reality of our life collide.”

When 100 million Americans are undergoing individual personal realignments at the same time, the opportunity arises to create a societal movement for change. The nation will not solve the challenges created by the discontinuity between the myth and reality of aging and disability using current tools for individual personal planning. Although the delivery and financing systems for long-term care should be considered as separate and unique, as also mentioned by Greenlee, they are still connected. Tools that can exist in both systems are needed to support the systems in meaningful ways for the benefit of the public.

Individuals cannot plan their way out of these challenges by them-

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5 Favreault and Dey (2015) define care needs to include “a range of services and supports individuals may need to meet their health or personal needs over a long period of time. Most [long-term care services and supports] is not medical care, but rather assistance with the basic personal tasks of everyday life, sometimes called ‘Activities of Daily Living’ (or ADLs).”

6 Activities of daily living (ADLs) are routine, everyday tasks such as bathing, dressing, eating, using the toilet, walking, and transferring (e.g., from a chair to a bed).

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

selves. “We know that from an economic perspective,” Alkema said. “We know that from a delivery system perspective. We know that from a family perspective. So I strongly suggest that we just erase that myth.” However, developing a more robust awareness will not be sufficient to address the disconnect between myth and reality. Alkema asked the workshop participants to create and implement new tools, systems of care, and policies to address the growing needs of older adults and those with disabilities. She cautioned not to focus on the negative elements of these challenges but rather to focus on the positive side, which is that this is an opportunity to create a new reality with better systems of care, better policies, and better programs.

DISCUSSION

An open discussion followed the keynote presentations. Workshop participants were invited to ask questions of and offer comments to the keynote speakers. The following section summarizes the discussion.

Greenlee began the discussion by offering a possible explanation for the concerns Alkema presented that highlighted the disconnect between what Americans believe and the realities of aging and disability. Greenlee suggested that the disconnect results from individuals’ feelings about the concept of independence. Most people do not want to admit that they might lose their independence. If admitting that they need care means that they will lose their independence, then they will not admit that they need care. However, if the question of independence and needing care is reframed by asking people what services they require to remain independent, then they make every effort to maintain their independence. She noted that the World Health Organization released a report that frames health as an issue of functional ability (WHO, 2015) because of the way functional ability is linked to independence. “It’s important for those of us who work in the health space to continue to connect our health care supports and our health-related supports to functional ability,” Greenlee said, “because that is what people need to maintain.” As an example, she said that diabetes itself does not affect independence so much, but rather it is the loss of a foot because of diabetes that impacts functional ability and thus independence. Similarly, hypertension itself does not affect independence, but having a stroke that results in paralysis will affect functional ability and independence.

Alkema added, “We have a very rigid idea of independence in this country about I gotta do it . . . and if I am not doing it, then I’m not independent.” However, she said humans are dependent on each other for many things; very few grow their own food, sew their own clothes, and generate their own electricity. “There is a way in which we can use lan-

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

guage to basically reframe the concept of independence and identity and interest and engagement as opposed to executional capacity,” she said.

Margaret Campbell of the National Institute on Disability, Independent Living, and Rehabilitation Research asked how to go about building and nurturing a bridge between the fields of aging and disability—two bodies of knowledge and policy streams that have been separate historically—so that there is the potential to create new partnerships and alliances that can help maximize independence equally among older adults and those with disabilities. In particular, she noted the absurdity of large amounts of money having been invested in research collecting data on disability, functional status, and the use of assistive technology when the research tends to study people only up until they reach age 65 or else the study population only begins at age 65.

Greenlee replied that she refers to this as multicultural work. She said that to do this work effectively, it is necessary to be able to live with dissonance. Disability and aging, for example, both have a history of stigma and discrimination, but they are not the same history, and civil rights factors into the field of disability in a way that it does not in aging. Furthermore, the two fields do not use the same terminology definitions. Therefore, bridging the fields of aging and disability requires patience, good intentions, and a lot of discussion about fundamental issues and clear communication about meaning. “The goal is not to think the same way or to be the same at all, but to have and articulate the same objectives,” Greenlee said. ACL has a shared vision of what it means to be an autonomous person living in the community with a need for both prevention services and supports. Greenlee cautioned that it is possible to get lost in the complexities of distinguishing between the different fields but to remain respectful and comfortable living with the differences. She said that ACL has changed some of the language it uses to accommodate the differences in how the aging and disability communities think and talk about “choice,” living in community “for a lifetime,” and end-of-life care. She said that disability and aging work will not be the same, but there are opportunities because they share common threats and common goals, such as the threat of the medical community dictating how individuals should live their lives and the goal of individuals living their lives how they want them to be.

Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×

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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Suggested Citation:"2 The Importance of Community Living and Maximizing Independence to Individuals and Society." National Academies of Sciences, Engineering, and Medicine. 2016. Policy and Research Needs to Maximize Independence and Support Community Living: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21893.
×
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Living independently and participating in one's community are priorities for many people. In many regions across the United States, there are programs that support and enable people with disabilities and older adults to live where they choose and with whom they choose and to participate fully in their communities. Tremendous progress has been made. However, in many cases, the programs themselves – and access to them – vary not only between states but also within states. Many programs are small, and even when they prove to be successful they are still not scaled up to meet the needs of the many people who would benefit from them. The challenges can include insufficient workforce, insufficient funding, and lack of evidence demonstrating effectiveness or value.

To get a better understanding of the policies needed to maximize independence and support community living and of the research needed to support implementation of those policies, the National Academies of Sciences, Engineering, and Medicine convened a public workshop in October 2015. Participants explored policies in place that promote independence and community living for older adults and people with physical disabilities, and identified policies and gaps in policies that can be barriers to independence and the research needed to support changing those policies. This report summarizes the presentations and discussions from the workshop.

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