What are the shared issues facing older persons aging into disabilities, and younger persons who are aging with disabilities?

Question 1 (100 word minimum) - 10 points - Assignment 5

Explain what the author, Torres-Gil in chapter 11, means that it is important to understand the "shared issues facing persons aging into disabilities and persons aging WITH disabilities." p. 245. Provide at least two specific examples that are discussed throughout the chapter. Please include page numbers where you located your information in the text.

Question 2 (100 word minimum) - 10 points - Assignment 5

Read chapter 12 carefully. Then, in your own words, identify two issues that policymakers and consumers face in the future for addressing aging and disability issues. Include page numbers for your examples.

Chapter 1-

Aging and disability are two arenas that are increasingly viewed as important and legitimate areas of inquiry. This book’s central theme of common agendas sets the stage for understanding the shared issues facing older persons aging into disability and younger persons who are aging with disabilities. Partnerships and coalitions between these constituencies are watchwords for promoting research, advocacy, and policy change. Yet the uncertainty of whether the goals of working together are viable and/or will make a difference in promoting common agendas of research, practice, and policy ensures fragility of these noble efforts. The hope is that professionals in the  fields of aging and disability, including service providers, researchers, advocates, and practitioners, will come together and promote the common interests of their unique consumer populations, older adults and people with disabilities, and the growing population they jointly share, people aging with disabilities. The extent to which this may be a populist or visible movement is in question, but efforts by such elites are steps forward. The central premise of this chapter is that, notwithstanding progress in achieving full consensus, we may be faced with the irony that demographic trends, public recognition, and political forces are moving forward without the benefit of the intellectual analyses described in this book. Persons with disabilities are aging. This is perhaps not yet fully recognized by the public or in the political arena, as little discernable attention is being given to the nexus of aging and disability—aging with

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a disability, whether early or late onset. In general, public awareness of growing old, the possibility of having functional limitations in old age, and the importance of care giving issues is increasing. Additionally, political controversies surrounding privatization of Social Security; the costs and pressures facing Medicare and Medicaid; the problems of the uninsured; and the inadequacies of the health care system, public and private, accelerate public interest in issues of aging and disability. However, there is only a murky joint evolution of demographics, health status, politics, and  public policy trends as they related to aging with a disability. Thus, important decisions in public policy are occurring that may force change on older adults, people with disabilities, and those aging with disabilities (the nexus among them) well before our intellectual understanding and proposed solutions start to have some effect. We may be facing a unique dilemma—that policy and practice with regard to aging with a disability may be moving independently of research and policy analysis—and we may be witnessing a political reaction to perceived demographic trends without the benefit of—or in spite of—evolving knowledge and research. If that is the case, what does this mean for professionals interested in these issues? What are the consequences of adverse decisions? How can we play catch up and/or salvage a modicum of informed and rational analysis based on our investigations and advocacy? Of course, this could be a mistaken impression on my part, and, in fact, there may be examples of research and policy analysis in the emerging field of aging with a disability coming together with political and policy changes to programs and public benefits affecting older adults and people with disabilities. Researchers and advocates may already be informing and influencing public policy. In turn, policy makers and opinion leaders may be incorporating the latest data and research into their decisions and actions. But if this exists, it is currently moving under the radar screen. On the assumption that this may not be the case, this chapter addresses that dilemma by illustrating the gap between research and policy analysis, why such a gap exists, the importance of resolving the dilemma, and what can be done in the short and long term.

SETTING THE STAGE

Figure 11.1 provides an illustration of an ideal nexus where interests in aging and disability are coming together around the concept of aging with a disability. This evolving subfield benefits from research and policy analysis in aging and disability that inform it, as well as those seeking to build coalitions and partnerships between constituencies of older adults and people with disabilities. In turn, such a nexus ideally influences public

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policy, informs practice, and integrates with existing programs for older adults, people with disabilities, and individuals aging with disabilities. The dotted lines in this illustration reflect the premise that, in fact, policy, practice, and programs may be evolving independently of what we are learning about aging with a disability. What are the contemporary events that provide evidence of this dilemma? The most potent political debates of the first decade of the new century center on the fiscal pressures on the two largest entitlement programs affecting older persons and those with disabilities: SocialSecurity and Medicare. Both programs are facing large unfunded liabilities; and both are facing demographic pressures of longevity, growing numbers of beneficiaries, declining birth rates, and fewer young workers. Resolutions of these pressures vary across the ideological and political spectrum. Conservatives and Republicans favor various aspects of individual and family responsibilities, a reduced federal role, and lower taxes. Progressives and Democrats favor expanded benefits, increased taxes, and a stronger national presence. Proposals to privatize Social Security and Medicare illustrate the stakes that those aging with disabilities have in these debates. Privatization of Social Security would involve the creation of individual

FIGURE 11.1 Evolution of policy, practice, and programs related to aging with a disability.

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Receiving less media attention, but equally important, proposals to privatize Medicare also affect the financial predicament of people aging with disabilities. In 2004, Medicare covered 35 million adults age 65 and older and 6 million people with disabilities under the age of 65 (Hoffman, Klees, & Curtis, 2005). Ideas to privatize Medicare are rooted within policy variants of individualized health accounts, whereby Medicare beneficiaries are given a predetermined annualized allowance for purchasing health insurance on the open market. This gives a measure of flexibility and choice to those who want health insurance outside the Medicare program. However, if the health insurance plan costs more than that allowance, the individual pays the difference—conversely, if it costs less, the individual can keep the difference. Even so, this is a precarious position for any individual to be in, as everyone is at risk of catastrophic illness or injury. Another variation would be tax credits and incentives for individuals to save for health care costs. Such a health IRA savings account would, like many private employer-based health savings account programs, be used to purchase health insurance or cover out-of-pocket costs for health care. This would allow for a combination of tax-incentivized savings for health costs and a lower-cost catastrophic health insurance plan. Regardless of how these privatized health care proposals are structured, they seem in almost every variation to work against the interests of those with disabilities and those aging with disabilities. The private health insurance market has historically not been receptive to those with preexisting conditions; HMOs are reluctant to bring on high-need and high-cost clients; and once a disability occurs (whether chronic, early onset, or late onset), health and medical costs climb dramatically. These privatization debates are, in part, products of the larger health care crisis. The numbers of uninsured continue to grow; those who are willing or able to purchase long-term care insurance are few; and health care providers, insurers, and practitioners face increasing numbers of indigent and medically insured clients. Add to this the escalating costs of prescription medication and the still-unproven benefits of a Medicare prescription drug benefit, and there are a host of disadvantages and risks facing those with a disability of any degree, and those aging with disabilities in particular. In the midst of this policy debate is one of the greatest victories for people with disabilities—increased longevity. However, with increased longevity the time frame for living under those uncertain conditions increases. If there is a bright spot in policy developments for persons with disabilities, it may be the Olmstead Supreme Court decision and the New Freedom Initiative. Olmstead set the legal stage for advocates and state providers to argue for the least restrictive setting for those in need of long-term care and assistance. The Olmstead decision means that

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states must provide services in the most community-integrated setting appropriate to the needs of qualified individuals with disabilities and directs states to make reasonable modifications in programs and activities to comply with this ruling. The New Freedom Initiative directs federal agencies to implement Olmstead and its principles across federal pro-grams. Thus people with disabilities, through civil rights legislation, are making policy gains. However, while these improve the ways and means of service delivery, they do not ensure the financial security of people with disabilities in old age. Arguably the financial status of people aging with disability is equally important to choice and control over long-term care service delivery. Both are important for a good old age—a discussion that has yet to surface in terms of people with disabilities. Thus a common piece of political and policy discussions is absent in the discussion of these policies—what the outcomes of these policy changes might mean for those aging with disabilities and how modifications in the major aging policies (OASI and Medicare) correlate with major change in disability policy (Olmstead and the New Freedom Initiative). What should individuals who are aging with disabilities expect from these policy proposals when considered together? How might the proposal affect their ability to live independently and have a measure of financial and health security? If life expectancy continues to increase for those with disabilities, what does this mean for their quality of life over longer periods of time? What recourse do they have if policy changes work against their interests? To an important extent, advocates for people with disabilities and older adults are making their voices heard, although their ultimate influence may be in question. However, often their voices are not convergent. When they are, they still often remain multiple and distinct interest groups. What is not being heard is an argument or discussion not just about the intersection of their interests, but about the interests of their joint constituencies—people aging with disabilities. Why might this be the case? What historical preconditions have weakened the ability of people with disabilities and older adults to find common cause in the policy arena and have lessened the ability of those aging with disabilities to have their voices heard?

HISTORICAL PRECONDITIONS

Earlier chapters in this book amply describes the emergence of two parallel systems of programs, benefits, services, and disciplines for older adults and people with disabilities. Cohen aptly describes the “categorization” of public benefits and services and the “obstacle of 

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categorical programming.” His thesis describes the fundamental basis of policy formulation in our constitutional form of democracy; one in which three branches of government (legislative, executive, and judiciary) are imbued with a checks-and-balances system that lends itself to indecisiveness, ambiguity, in crementalism, and interest-group politics. In the modern era of the New Deal, the New Frontier, and expansion-ist government, it has allowed organized groups of citizens and special interests to influence this permeable government with specific and narrow agendas. Thus, as Alexis de Tocqueville (1945) noted a century before, organized groups with common interests can obtain particular benefits. The dilemma is that these interest groups rarely work for the collective whole or help to foster a cohesive or comprehensive approach to social concerns. Thus, in the last 60 years, we have seen a host of specialized legislation, regulations, public benefits, and programs targeted at specific needs and groups without an overarching framework that accounts for collective interests. For older persons, the politics of aging  reflects this fundamental phenomenon. Old-age interest groups began organizing during the1930s. By the 1960s a host of well-structured groups was advocating for a plethora of policies, including income supports, health care, transportation, social services, housing, volunteer activities, and special benefits (e.g., tax credits, senior discounts). They were eminently successful in the 20th century, and today OASI, Medicare, the Older Americans Act (OAA), and even simple merchant discounts based on age represent their slice of categorical benefits and services. However, this network of age-related programs and services lacks the political clout to influence its much bigger brothers and sisters (e.g., Medicare, Medicaid, Social Security, and veteran and military pension systems). Thus it retains purview over only a small segment of aging policy, with a mandate much broader than its budget. People with disabilities also play this interest-group game, although their entrance in force came much later. Their initial organizing flowed  from the independent living movement on college campuses and quickly adopted a much different lexicon from that of old-age interest groups. Their focus  on interest-group politics centered on notions of independence, dignity, and the  mainstreaming and control of resources, programs, and services. The use of personal attendants contrasted with the more program- and professionally oriented system of case management and institutionalization. In turn, the disability rights movement was successful in promoting its own categorical programs, including the Rehabilitation Act of 1973, the Education for All Handicapped Children Act of 1975, and the Americans with Disability Act of 1990. Additionally, they have generated a long-term independent living  movement dedicated to pursuing civil rights for persons with disabilities  

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been largely centered on coalition building between advocacy groups marshaled around Social Security, Medicare, and Medicaid provisions as they relate to respective interests (Binstock, 1992; Torres-Gil & Putnam,2004). This may or may not ensure that the needs of people aging with disabilities are met. A measure of advocacy success is seen at the federal and state levels around long-term care policy. Several states, including Washington, Oregon, and Pennsylvania, have moved toward a consolidation and integration of services for elderly, disabled, and long-term care recipients. This has not been without resistance from the two key constituencies—older adults and working-age people with disabilities. While interested in greater efficiency and effectiveness, the leadership of aging and disability groups and their constituencies vigilantly watch to ensure that these joint programs do not compromise existing benefits and services. Much of this resistance stems from a desire to preserve their own particular entitlements and categorical programs and the ideology from which they originate. Some of these fears remind us that a lack of common language serves as a barrier. But perhaps at a more basic level, it comes down to Ansello’s (2004) prescient observation that “for the disabilities system, aging is a success; for the aging network, disability is a failure”(p. 4).Proponents for older adults have a latent fear that their long-time goal of changing society’s perception of senile and obsolete elderly to one of vigorous, active, and contributing retirees will be somehow diminished by the growing legions of old people with walkers, crutches, wheelchairs, and other visible manifestations of disability. And for the energetic and ambitious core of younger disabled who fought so hard to be like everyone else and to be part of society on their own terms, the thought of being labeled an old person and having to use senior citizen centers, adult day care programs, and—the ultimate horror—nursing homes is galling at best, and a betrayal of their fundamental beliefs at worst. Yet it cannot be said often enough: the demographic reality of increased longevity will affect both groups regardless of their discomfort. Increased longevity will propel people with disabilities into the world of old-age benefits. And those older adults who are enjoying unprecedented longevity and greater health and active lifestyles at a later age will sooner or later face disabling conditions that will limit their freedom of movement and force them to confront a world that the younger disabled know well. Hence, the nexus of aging and disability and the overlay of aging with a disability are real and will become more visible over the coming years. Therefore, the time has come to bring this nexus of aging and disability—aging with disability—into the realm of public policy and categorical programs and to find a way to reframe the politics of both groups in a way that gives them the opportunity not just

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to have coalitions on common issues but to create alliances based on a shared constituency. How to do this? Is it even possible? What type of paradigm shift might build a foundation for a nexus of policy and aging with a disability? What might enable that polio survivor to look forward to an old age of dignity, comfort, and enjoyment regardless of the level of his or her disability or mobility limitations?

A  PARADIGM  SHIFT: A NEW POLITICS FOR AGING WITH DISABILITY

The challenges in finding a resolution to this dilemma are conceptual, professional, and political. Conceptually, we must find or build an intellectual bridge that brings together the separate worlds of disability and aging. Professionally, much has been invested in the education, training, and research of those interested in elderly and disability concerns. Politically, the lack of a powerful interest group that can articulate the demands of persons aging with disabilities across the myriad advocacy groups of older persons and the disabled makes it difficult to develop a policy agenda that can influence contemporary policy decisions and trends. What might overcome these challenges? How might we begin a paradigm shift that moves us toward a context incorporating the broader, more encompassing needs of anyone who might have to age with some form of disability, whether it occurs early in life or in later years? The first step is perhaps to focus on what it is that causes individuals to fear growing old. Those concerns stem from being alone, needing help with the basic activities of daily living (e.g., bathing, toileting, transferring, getting dressed, eating), losing memory, and finding someone to take care of them. For aging baby boomers, this reality is now present with their parents and grandparents. But soon—within 10 to 20 years—this reality will affect them directly. Issues of caregiving capture these latent fears and the growing recognition by the public that all of us are at risk of some sort of chronic physical or mental disability that will require us to confront an increased life span with some amount of limitation and impairment. Yet, with the exception of younger persons with lifelong disabilities who have had time to adjust to these realities, and older persons suffering strokes, broken hips, or rheumatoid arthritis (who therefore have had no choice but to face this reality), most persons remain blissfully unaware of what might eventually befall a majority of the aging population. Thus, to respond to this admittedly negative scenario, we must redirect our advocacy and coalition-building efforts to one of reframing

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the public dialogue toward teaching individuals that all of us are but one fall, one accident, or one negative experience from these realities. Care needs are a salient issue for both aging and disability populations and their advocates (Torres-Gil & Putnam, 1999). In creating a first model of a joint agenda for persons aging with disability, care-related issues have great appeal. Caregiving and caregivers are popular political issues with which most elected officials have some personal experience, be it in the form of a disabled child, a middle-aged friend incurring chronic disease, or an older relative with cognitive or physical decline. Despite the obstacles of language, definitions, and historical differences in service delivery preferences, the central theme of “Who will help us?” has the potential to connect policy and politics to the research, policy analysis, and advocacy necessary for merging the contemporary developments and the intellectual interests of those aging with disabilities. Additionally, we must reframe our views of both aging and disability so that individuals know that, even with some form of limitation, one’s quality of life or contribution to life need not diminish with disability or old age. What causes tremendous denial and resistance toward public support of disability and old age are the misperceptions and stereotypes that disability and/or old age lead to a life without vigor, mobility, and activity and will somehow be “worse than death.” What is missing is the understanding that a life with a disability at any age can, with the proper supports, services, attitude, and assistance, be just as rewarding, enjoyable, and productive as a life without a disability. Thus, as researchers and policy analysts, we may not be factoring in the latent fears and insecurities that shield the public and policy makers from the need to act on programmatic, policy, and political responses to the needs of anyone aging with disability. Too often, advocates for older adults and people with disabilities focus on worst-case scenarios that amplify the negative aspects of their concerns in order to build a political case. What can result, however, is the reinforcement of an image that most individuals want to suppress or ignore. Thus, a resolution to this challenge is to reframe our interests in a more positive context, appeal directly to public insecurities, and create a paradigm where a wider segment of the public and policy world see a stake in these issues. The inherent research, practice, and policy challenge is that we have a puzzle without a circular logic; one that forces us to connect research with the current infrastructure for older adults and people with disabilities. As a result it is (and will continue to be) difficult for scholars to get ahead of the reality curve and actually influence future developments with intellectually sound and rigorous research and policy analysis. Figure 11.2 displays an ideal circular framework of where we

Translating Research Into Program and Policy Changes 257

ought to go and may look as follows. This logically and ideally has our form of research influencing the real world of policy, programs, disciplines, and scholarship and is leading to changes in evaluation, funding, interdisciplinary activities, and policy advocacy. In turn, all this pushes the frontiers of research on aging with disabilities.

MOVING TO THE NEXT STEP

We may not have much time to connect the circle and bring research, policy analysis, and evaluation into the actual world of politics and decision making. The ongoing debates about federal deficits, maintaining or diminishing a social safety net, privatizing Medicare and Social Security, and addressing the growing unfunded liabilities in health entitlement and pension programs may force Congress, the federal government, and state legislators to enact laws and regulations that work against the interests of older adults, persons with disabilities, and those aging with a disability. Yet, paradoxically, there will be a pendulum swing in public opinion that may be more favorable to the interests of these constituencies. This may be wishful thinking, but the demographic reality is that more of us will be old, more of us will incur some form of mobility limitation, and more of us will experience growing old with a disability. This will invariably build an electoral constituency that, if well organized, can influence the political debates, and we may well find a public outcry to do something for these groups. The dilemma will be that when that time comes, the escalating federal deficits and debt may be such that governments will focus on rebuilding the lagging public infrastructure and immediate needs and may not be in a fiscal position to expand public benefits and assistance. Regardless, these issues will be with us for generations to come, and whatever can be done by the research community will eventually have an impact on the public dialogue. This book and its individual contributions are the foundation by which that public discussion can commence.

FIGURE 11.2 Ideal circular frameworks for aging and disability programs, policy, and research.

ought to go and may look as follows. This logically and ideally has our form of research influencing the real world of policy, programs, disciplines, and scholarship and is leading to changes in evaluation, funding, interdisciplinary activities, and policy advocacy. In turn, all this pushes the frontiers of research on aging with disabilities.

MOVING TO THE NEXT STEP

We may not have much time to connect the circle and bring research, policy analysis, and evaluation into the actual world of politics and decision making. The ongoing debates about federal deficits, maintaining or diminishing a social safety net, privatizing Medicare and Social Security, and addressing the growing unfunded liabilities in health entitlement and pension programs may force Congress, the federal government, and state legislators to enact laws and regulations that work against the interests of older adults, persons with disabilities, and those aging with a disability. Yet, paradoxically, there will be a pendulum swing in public opinion that may be more favorable to the interests of these constituencies. This may be wishful thinking, but the demographic reality is that more of us will be old, more of us will incur some form of mobility limitation, and more of us will experience growing old with a disability. This will invariably build an electoral constituency that, if well organized, can influence the political debates, and we may well find a public outcry to do something for these groups. The dilemma will be that when that time comes, the escalating federal deficits and debt may be such that governments will focus on rebuilding the lagging public infrastructure and immediate needs and may not be in a fiscal position to expand public benefits and assistance. Regardless, these issues will be with us for generations to come, and whatever can be done by the research community will eventually have an impact on the public dialogue. This book and its individual contributions are the foundation by which that public discussion can commence.

FIGURE 11.2 Ideal circular frameworks for aging and disability programs, policy, and research.

Chapter 12

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for older adults and people with disabilities, past legislative and political history indicates that change occurs by taking both small and large steps in a new direction. It may be expected that not only the growth of the aging-with-disability population, but the growth of the older population in general, will generate new and reinvigorate old discussions of how best to support older people experiencing disability. These discussions may shed light on the growing diversity of the aging population, with one out-come being greater flexibility in service delivery programs for consumers who seek more choice in program options to meet their needs than are currently found available in public policies. Although potential for program and policy change exists, unified service networks and support programs still remain an exception to the rule rather than the norm. As such, the issue of collaborating and coalition building across aging, developmental disability, and physical disability service networks remains an important one that can not be lost to theorizing about future options. The reality of daily life for a person—whether young or old—experiencing disability is often challenging. Individuals with disabilities seeking assistance and services can, and often do, face undue burdens in obtaining supports that allow them to remain contributors to our communities. Persons aging with disabilities are a population group not specifically planned for in current aging or disability policy. Service delivery systems can work to accommodate them, but when they do not or are not able to provide appropriate supports and services, people aging with disabilities fall through the cross-network cracks. At best, this is problematic for ensuring good health and well-being and personal and financial security, and for facilitating community participation. At worst, it is potentially threatening as individual, social, and economic resources are overly taxed in an attempt to address health emergencies, stave off institutionalization, and avoid impoverishment. This experience of being in the balance between service networks is one encountered too often by younger adults aging with disability and older adults experiencing disability for the first time. Although the long-term need may be to create a seamless support system for individuals with disabilities across the life span, the short-term need is to build bridges that help people negotiate both aging and disability service networks so they avoid pitfalls that may put them at physical, social, and economic risk. The contributors to this volume have eloquently outlined the ideological and practical issues related to building these bridges. The case study of Missouri and the subsequent conferences intended to both disseminate and inform practice and knowledge development presented a snapshot of where  professionals currently stand in terms of working to create connections and partnerships to facilitate cross-network collaborations and coalitions.

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Kane and Cohen highlighted the philosophical and policy challenges that surround the larger questions of whether collaborations and coalitions should be expected and encouraged between older and younger persons with disabilities and aging and disability service networks, and what realistic outcomes may be. Ansello and Oxford presented their experience and provided their expertise on how to build and sustain collaborations and coalitions. Together they proved that joint endeavors are possible yet require substantial thoughtfulness and skill. Powers and Campbell emphasized the significance of including people with disabilities in knowledge development, ensuring that stakeholders not only participate in research but that research itself focuses on demonstrable, applied outcomes that benefit those stake-holders. Torres-Gil outlined the need for people with disabilities to find  a common issue to galvanize a collective political agenda and the importance of creating feedback loops among scholarship, policy, and practice. Each chapter in the volume on its own has lessons for consumers, practitioners, policy makers, and scholars. Collectively, they highlight many substantial issues for the future, including:

• The need to more clearly understand the social constructions of aging and disability and the ways they influence consumer attitudes, professional beliefs, program structures, and policy options

• The need to increase knowledge about and professional skills to address “cross-population” needs and issues including how to work successfully across aging, developmental disability, and physical disability service network lines.

• The need to better understand the critical issues that separate younger and older adults with disabilities as consumers and their relevance and importance for effective and appropriate ser-vice delivery.

• The need to more clearly understand and critically analyze both historical and current policy decisions related to support service policies for older and younger persons with disabilities and the resultant outcomes of these decisions.

• The need for additional scholarship in the area of cross-network collaborations and coalitions among consumers, professionals, and other stakeholders within aging and disability service net-works.

• The need to include stakeholders, including consumers, practitioners, scholars, and policy makers, in the future discourse of how to bridge the gaps between aging and disability service networks so that people with disabilities can remain engaged in our communities across their life spans.

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 Although this list may seem great, scholars in the fields of gerontology and disability studies; practitioners working in aging and disability service networks; service consumers of all ages with disabilities; and policymakers at the local, state, and federal levels are already engaged in activities that are forwarding this work. Moreover, much of the knowledge learned in implementing aging and disability policy separately can be applied to understanding the issues of cross-population and cross-network collaborations. The largest challenges appear to be moving outside traditional ideological, professional, programmatic, and policy boundaries to understand where the intersections of aging and disability lie and how they change the nature of what individuals need and what the responses to those needs should be. The intersections between aging and disability mark our progress as a nation in helping people with disabilities to live longer lives and in developing support services to help facilitate their continued participation in our communities. The small steps made through collaborations and coalitions facilitate the larger steps of significant social policy change. Our charge is to find ways to succeed at doing both in ways that continually affirm the rights of people of all ages with disabilities and their importance as individuals in our society.

Question 3 (200 word minimum) - 35 points

Read a section(s) of the text that was not assigned to you. Please include the page numbers in your response. Explain why you feel the information is important and what you learned in regards to disability and aging issues.

I picked this for my text.

Chapter 10-

 226 THE GOVERNMENT-WIDE SHIFT TO ACCOUNTABILITY FOR RESULTS

Increasingly, federal agencies are being required to demonstrate the value of the programs and projects they fund by measuring and reporting on how their funding serves a particular purpose and how they can prove that progress toward that purpose has been realized (Westbrook,2004). Referred to in some circles as “accountability for results,” this government-wide change in expectations involves a shift from a primary focus on documenting “activities” (what agencies and grantees are doing) and “productivity” (how much they are doing) to an expanded emphasis on the “effects,” or outcomes, of what they are doing for target populations (Campbell & Schutz, 2004).The emphasis on accountability within government is not new, of course. But growing tensions between the needs for social change, on one hand, and decreasing federal funding available, on the other, have intensified pressures to demonstrate the public benefit of federal discretionary programs and to do so more quickly (Westbrook, 2004).

Impetus Behind the Shift to Accountability for Results

The origins of the accountability for results movement can be traced broadly to total quality management or performance management within the private sector and outcomes research within program evaluation. Performance management refers to the practice of using performance measures, performance goals, and performance data to improve program operations, prioritize and allocate resources, inform managers about needed adjustments in policy or program directions, and frame reports on success in meeting performance goals. Outcomes research and evaluation can be thought of as an extension of performance management. Although no consensus exists on a precise definition, in general, outcomes research refers to an array of different types of research that seek to understand the end results of particular programs and interventions. End results include effects that people experience and care about, such as change in access to services, ability to function, and overall quality of life. In the U.S. government, the shift in expectations for accountability is codified in the Government Performance Results Act (GPRA) of 1993 and the President’s Management Agenda (PMA) of 2001. GPRA sought to pro-mote greater efficiency, effectiveness, and accountability in federal spending by requiring agencies to develop a strategic plan, establish performance goals and performance targets, and have an annual performance report that demonstrates whether the targets are met (for details, see Office of Management and Budget, 1993). The PMA reinforces and strengthens

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GPRA requirements by putting forth an aggressive strategy for improving the management of the federal government through “performance-based budgeting” ( Office of Management and Budget, 2006a). Under this initiative, those agencies and programs that produce measurable results toward stated goals at an acceptable cost to tax payers are more likely to receive priority in funding. Those that do not meet their goals are likely to see funding reductions. To implement performance-based budgeting, the Office of Management and Budget (OMB, 2006c) developed the Program Assessment Rating Tool (PART), the purpose of which is to assess and improve program performance so that the federal government can achieve better results. (Because the PART includes a consistent series of analytical questions covering program purpose, strategic planning, program management, and program results, it allows programs to show improvements over time and allows for comparisons between similar programs.)To date, more than 60% of all federal programs have received a PART assessment, and the resultant data are being used to guide the President’s Budget. One such agency that has received a PART assessment is the National Institute on Disability and Rehabilitation Research (NIDRR),located in the Office of Special Education and Rehabilitative Services, within the U.S. Department of Education. As the largest funder of disability research within the federal government, and most likely also the largest funder of research on aging with disability, NIDRR’s experience with the accountability shift is relevant to the theme of this chapter. Between 2003 and 2005, NIDRR was very busy revising the agency’s entire approach to program management. The objective of this activity was to convert the agency’s initial PART rating for fiscal year (FY) 2005from “non-performing” (i.e., results not demonstrated) to “performing”(or adequate) based on the FY 2007 review. Programs rated “results- not-demonstrated” (RND) are those that have not been able to develop  acceptable performance goals or collect data to determine whether they are performing; whereas “adequate” programs are those that need to set more ambitious goals, achieve better results, and improve accountability or strengthen management practices. (For more details on PART ratings, see Office of Management and Budget, n.d.) To achieve a rating of adequate involved formulating annual and long-term performance goals for NIDRR, developing a logic model of expected outcomes for the agency’s investments in research and development, implementing anew performance reporting and assessment system, and producing a new long-range plan based on the NIDRR Logic Model to guide the agency for the next 5 years (National Institute on Disability and Rehabilitation Research, 2006).

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 As the above example of NIDRR illustrates, GPRA requirements for performance measurement combined with PMA initiatives in performance-based budgeting and uniform program assessment (i.e.,the PART) are fundamentally changing the way the U.S. government does business. But the shift to accountability for results is not limited to the federal government. Increasingly, state and local governments, as well as nonprofit organizations and foundations, are linking funding to applicants’ abilities to demonstrate that project activities and products are having measurable effects on system capacity and/or intended beneficiaries. In short, the accountability for results movement of the past few years has changed the rules of the game for funding agencies inside and outside government, and it behooves those doing business with these organizations to learn what those new rules are. Regardless of whether program activities are focused on research or service delivery, demonstrating outcomes has become everyone’s business.

Relationship to Knowledge Translation

Demonstrating accountability for results requires more than learning the new rules of performance management, however. It also requires an increased emphasis on translating the knowledge gained from pro-gram activities into the settings where the information can be used to advance understanding, inform policy, change practice, enhance system capacity, and improve the lives of intended beneficiaries. As defined by the Canadian Institute of Health Research (2004), knowledge translation(KT) refers to the “exchange, synthesis, and ethically-sound application of knowledge within a complex system of relationships between researchers and users.” The goal of KT is to accelerate the use of knowledge to yield benefits for society. Interest in knowledge translation is becoming another front-burner issue for funding agencies and organizations because of the growing recognition that what is learned in research settings is often not used in daily practice to inform policies and/or improve service and clinical care. Evidence of this disconnect between discovery and delivery is supported by a 1998 review of published studies on the quality of health care received by Americans, which found that only about three out of five patients with chronic conditions received recommended care (Schuster, McGlynn, &Brook, 1998). Moreover, even when research results are used in practice, the delay between the production of the knowledge and the utilization of the knowledge to benefit individuals can often take decades. For example, within the context of clinical research, Balas, Boren, and Brown(2000) have demonstrated that it takes an average of 17 years to turn14% of original research to the benefit of patient care. Within the U.S.

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 government, the Agency for Health Care Research and Quality (2001)has taken the lead in working to close the gap between “discovery and delivery” through the Translating Research into Practice (TRIP) Initiative. This combined interagency and public-private initiative seeks to identify implementation techniques and factors that have proved successful in translating research findings into diverse applied settings to improve clinical practice and patient outcomes. Other agencies, such as NIDRR, are also going beyond the traditional focus on widespread dissemination to promote a more targeted focus on knowledge translation with the goal of shortening the time interval between the agency’s investments in research and the ability to demonstrate results for people of all ages with disabilities. (For details on NIDRR’s approach to knowledge translation, see National Institute on Disability and Rehabilitation Research, 2006.)Recognition of the need for improved knowledge translation in applied research contexts should be welcome news to disability leaders, who have long been critical of what is perceived as the lack of timely and relevant findings they can use to improve their quality of life. Perhaps nowhere in the aging and disability nexus is the need for increased research relevance and accelerated knowledge translation greater than for the growing number of individuals aging with long-term disabilities. Although precise estimates of the size of this segment of the disabled population have been difficult to come by due to lack of appropriate survey questions (Kemp & Mosqueda, 2004), available analyses suggest that there may be as many as 25 million Americans who are aging with various types of disabilities acquired at different stages of the life cycle (McNeil,1994). Many of these individuals are experiencing the unexpected and debilitating effects of secondary health conditions directly or indirectly related to the original impairment that could be prevented if more were known about effective interventions and if effective interventions were translated into practice in a timelier manner. Results from the 2005 White House Conference on Aging (December11–14, 2005) and the WHCoA Mini-Conference on Disability and Aging(July 21–22, 2005) provide further evidence of the need for improved knowledge translation efforts between aging and disability networks. Although organized around similar themes or policy tracks (e.g., healthy long-term living, economic security, productivity, and social engagement),the resolutions and recommendations that came out of these two agenda-setting events differ markedly in how they describe their target audience or constituencies (i.e., baby boomers and older adults as opposed to individuals aging with and aging into disability) and in the solutions they endorse. This difference is the basis of a recent comparative analysis of recommendations from the two conferences (Campbell, 2006) that shows that eight of the “top 10” WHCoA resolutions focus on improving long-term care and health services and deliver systems (White House Conference on Aging, 2005b), in contrast to the final  report from the Mini-Conference on Disability and Aging, which focuses more on the  role of technology and other environmental interventions in promoting healthy aging, economic security, and livable communities (White House Conference on Aging, 2005a).  

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Taken together, the shift to accountability for results and the related emphasis on knowledge translation raise the bar for applied research in aging with disability, while also paving the way for improving the effectiveness and utilization of research results. On the downside, new accountability standards require researchers to take on the added burden of demonstrating the effects of program activities, while at the same time complying with accepted standards of scientific rigor in conducting research and service delivery activities. Similarly, engaging in knowledge translation requires researchers to go beyond traditional approaches to dissemination to become more strategic in communicating results to different settings and in a form that can be more readily utilized by target audiences and intended beneficiaries. On the upside, satisfying the new accountability requirements helps researchers and program managers generate the data needed to respond to the growing demand that funding and policy decisions be based on sound evidence of what works. Additionally, successfully implementing KT helps to overcome the mutual tensions and misunderstandings that too often characterize relationships between re-searchers and practitioners and between aging and disability leaders and serve as barriers to effective collaboration and utilization of results across disciplines and service delivery networks.