Excerpted from Chapter 28 of Community Supports for Aging Adults with Lifelong Disabilities, edited by Matthew P. Janicki, Ph.D., & Edward F. Ansello, Ph.D.

Copyright © 2000 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

The next 15-20 years should see a number of developments that will affect the provision of community supports for aging adults with lifelong disabilities. These developments include patterns of aging in the general population and characteristics of those with lifelong disabilities who are at middle age but who soon will be the "aging," those who will attain 50 or 60 years of age or more.

Aging in the General Population

The populations of the developed nations will be considerably older in the next decades as infant mortality declines, life expectancy increases, and the median age at death works inexorably upward. As we noted in Chapter 1, improvements directed toward the early years of life have produced longevity unwitnessed in history. On every continent, the more developed nations are projected to manifest this "graying." Even among nations that are currently developing, infant mortality rates are expected to fall significantly, producing relatively older general populations. The critical issue remains that the aging of the world is occurring largely without commensurate growth or development in the various social institutions needed to deal meaningfully with this aging. To different degrees among the nations, aging of the general population has so far produced little in the way of the enlightened health care, workplace, personal development, or public policy expertise needed to ensure that added years are beneficial years for both the individual and the nation. To be sure, achievements in public health have, at times, been spectacular. In the United States, the Centers for Disease Control and Prevention (1999) reported that deaths from diseases of the heart and from stroke, which together accounted for more than 40% of all deaths for most of the 20th century, declined 56% and 70%, respectively, between 1950 and 1996. The Centers for Disease Control and Prevention attribute the decline to prevention efforts and improvements in early detection that lowered risk factors (smoking, high blood pressure, cholesterol levels) for the overall adult population and to improved cardiovascular diagnoses and treatment. Notwithstanding such remarkable accomplishments, gerontological and geriatric developments have remained modest. Research on the processes of aging, not on specific disease states that may or may not be more prevalent among older adults, is still minimal in contrast. The numbers of programs that educate geriatric practitioners have remained small. Shortfalls exist in geriatric medicine, nursing, and social work, for example. Furthermore, employers have just begun to awaken to the shortsightedness of practices that encourage older workers to leave the workplace, taking expertise, loyalty, and productivity with them. Older adults themselves wrestle, at times, with the ambiguities of early retirement and lengthened life expectancy as they satisfy their socially sanctioned roles and leave for the un-known. Spasms of concern interspersed with years of neglect have characterized how governments tend to develop public policy related to older adults, as in their never-thorough analyses of pension schemes such as Social Security. As counterintuitive as it seems, aging of the general population is still being discovered and its myriad implications are yet to be addressed systematically.

It may be characteristic of social institutions such as those just mentioned to respond primarily to crises. Without a near-term calamity, it may be that they change exceedingly slowly. Certainly, the decreases in mortality and morbidity and the extension of life expectancy carry none of the urgency of crises such as economic depression or virulent epidemics. If this is so, what are the implications for aging with lifelong disabilities when this phenomenon is occurring amidst a demographic evolution that is colored, if at all, with positive and noncrisis tones? For instance, will the general population's improving health status add to or detract from a focus on older adults with lifelong disabilities? Will decreasing rates of morbidity and disabilities highlight the needs of these older adults by contrast, or will their needs become further marginalized as exceptions to overall population well-being? In short, is the aging of the general population good for older adults with lifelong disabilities?

Aging of Midlife Adults with Lifelong Disabilities

A greater percentage of those who will be older adults with lifelong disabilities 15-20 years from now will have experience in self-care and managing personal assistance than do today's older adults. Although the latter have often grown older invisibly in natural family contexts in their communities, those who are at midlife today have grown up the beneficiaries of increasingly enlightened public policies that have encouraged more education, more consumer control of services, and more engagement in the mainstream of life. There is often a gulf between the ideal and the practice, but, overall, adults with lifelong disabilities who are currently at midlife should reach 60 or more years of age healthier and more experienced with managing their own support than today's older adults are. They also will likely be far more numerous than today's older adults. A tripling by 2015 of the number of known older adults with lifelong disabilities is a reasonable estimate for the United States, with increases in the millions worldwide ("Year of 6 Billion," 1999). It is important to note, nonetheless, that during the next 15-20 years, the needs of newly "discovered" older adults — that is, older adults whose family caregivers have become incapacitated or have died — likely will capture more of the time and resources of both the aging and the developmental disabilities services systems. Those who will have grown old invisibly in the care of their families — that is, those whose prolonged family caregiving will have been made possible by the aging evolution — will appear like numerous blips on a previously blank radar screen. Unless managed judiciously, services at that time may be conflicted; demand for agency services for the formerly invisible older adults may contend with demand for continued personal assistance services for those who are currently at midlife and who will have grown older. As Coogle, Ansello, Wood, and Cotter (1995) found, developmental disabilities-related service agencies tend to demonstrate passive attitudes toward outreach to and identification of older consumers and toward the appropriation of human and material resources; they also found that those whose needs were made known to the agencies by others or by the consumers themselves received attention. During the next 15-20 years, advocates for the formerly invisible older adults and consumers who will have managed their own personal assistance as they grew old may find themselves contending with each other for services in a "squeaky wheel gets the oil" scenario.

Policy Implications

There are a number of policy implications of the increasing numbers of older adults with disabilities, either lifelong or late onset, among the citizens of the world's nations. Clearly, the status quo should not be continued. It ranges from fragmented, uncoordinated services and reactive rather than proactive practices to isolated examples of intersystem cooperation and empowerment of individuals in managing their own lives. Although the rates of morbidity and disabilities are declining among developed nations, the absolute numbers of older adults with disabilities are increasing; each number is a human life that deserves better choices, services, and supports. The increasing numbers of older adults with lifelong disabilities have often been ignored by the aging and developmental disabilities service systems, as Coogle, Ansello, Wood, and Cotter (1997) found in a national survey of state units on aging and developmental disabilities. The growing numbers of these individuals should make acknowledgment of their presence, their abilities, and their needs inescapable. The form that the acknowledgment takes, moreover, can be shaped positively by emulation of the recommended practices so thoughtfully articulated by the contributors to this book and by public policy initiatives that help set the direction for this field. A public policy "wish list" might include more effectively trained staff, greater interagency cooperation, recognition of natural support environments, increases in geriatric specialists, innovative cross-system partnerships, and education and training curricula. Next, we expand on what we see in each of these areas.

Effectively Trained Staff

Having more aging adults with lifelong disabilities requires more mandates and associated funding for the cross-training of staff members in agencies that serve older adults and people with lifelong disabilities. Such cross-training would not only introduce aging-related personnel to the terminology, philosophies, funding streams, and practices of the lifelong disabilities world and vice versa but also would address the fragmentation that often exists within the lifelong disabilities field itself; therefore, those who work in intellectual disabilities would learn of the worlds of cerebral palsy, polio, autism, spinal cord injury, and other subsets of lifelong, developmental disabilities and, again, vice versa. Becoming conversant in another's sphere of operation is the key to resource sharing and other innovations to serve consumers more effectively.

Greater Interagency Cooperation

There need to be public policy initiatives to strengthen cooperation between the aging and lifelong disabilities fields. These might include directives for memoranda of agreement or memoranda of understanding between the highest levels in aging and in lifelong disabilities. Such memoranda have been shown to be a prerequisite for intersystem cooperation, which ultimately occurs in a more local arena. Sanctioning intersystem cooperation enables local agencies to develop area planning committees that make full use of the fragmented and sometimes overtaxed resources of the agencies that would constitute the local cooperative. Pointedly, combining numbers of small and even overtaxed resources tends to produce the critical mass for less taxed, more efficient resource allocation (Ansello, Coogle, & Wood, 1997).

Recognition of Natural Support Environments

There needs to be a progressive evolution of long-term health care policies toward the family or noninstitutional contexts. Nations differ in their use of institution-based care of individuals with lifelong disabilities. Even the individual states or provinces within nations often differ from one another in this matter. The so-called "deinstitutionalization" wave has affected some jurisdictions more than others. It seems that philosophies of self-determination, self-care, and person-centered planning, as well as the costly economics of institutional care, would argue for a shift in focus away from large, institutional, long-term care and toward aging in a manner preferred by the overwhelming majority of the general population, namely, aging among one's family and friends within neighborhoods and communities. Individuals who grow old with lifelong disabilities and those who acquire impairments upon growing old tend to receive most of their chronic care from their families, yet these family caregivers receive little, if any, recognition or training. Funding flows to institutional care and to licensed professionals who, in the aggregate, provide far fewer hours of long-term care than do families. At the same time, one recognizes that individuals with lifelong disabilities who are now at midlife often reach that point in the life span through the exercise of their own decision making and their own management of personal assistance services that enable them to live a more normal life. Continuing to recognize only institutions and professionals as the agents of the long-term care system will not fit with the histories of these midlife individuals as they grow older in the next 15-20 years.

The core apparatus of the long-term care systems (location, funding, and training) needs to shift to include the caregiving family of parents, spouses, siblings, and relatives and the person with lifelong or late-onset disabilities. They deserve more financial support in the form of tax credits, grants, stipends, and allowances, for they are the locus of ongoing care. Their cessation of or inability to continue this ongoing care could have disastrous consequences for the more formalized sector. They deserve training from established health care providers, because family caregivers and individuals with lifelong disabilities regularly face issues of medication management, nutrition, health care coordination, transportation, social engagement, mental health, assistive technology, and so forth without the preparation or training that their formal counterparts receive. It is likely that the illogic of this policy will become increasingly obvious as the decade progresses. Already, Virginia and several other states have begun to legislate some cash assistance to family caregivers, and members of the United States Congress introduce more bills to enlarge the purview and increase the funding of the Medicaid-financed home- and community-based care programs.

Increases in Geriatric Specialists

National legislation should encourage increases in the numbers of professionals who are trained in geriatrics, in disabilities, and in the combination of aging and disabilities. Although shortages of physicians and nurses who are trained in geriatrics are not universal among the developed nations, they are disturbing in the United States. The Alliance for Aging Research reported that approximately 6,800 physicians in internal medicine, family practice, and psychiatry have become "certified geriatricians . . . out of a total U.S. physician population of 684,414" (1996, p. 5). This shortage of practitioners who are trained in geriatrics is being maintained, in part, by managed care practices that limit the amount of time that practitioners may spend with patients. Older adults with disabilities often "present with" multiple complaints and, in effect, frustrate the time allotment process. Their ongoing conditions do not lend themselves to reversals by physicians' interventions. Moreover, the processes of human aging produce "individuation," or increased heterogeneity, within a group as its membership ages. This requires fine-tuning the health care interview to the one individual being seen, a practice that is inconsistent with medicine-by-the-numbers. The infusion of greater numbers of women into health care may benefit geriatric care in the next 15-20 years, for women may prove more efficient in listening to patients and communicating within limited time frames. Increasing the numbers of physicians, nurses, social workers, psychologists, physical therapists, and others who are trained in geriatrics and gerontology is itself a daunting challenge. It may be accomplished through fellowships and stipends to students in training and through changes in funding formulas to teaching hospitals and schools that graduate these practitioners. More challenging still is the need to redress the shortage of these professionals who are trained in their primary disciplines, plus gerontology or geriatrics, plus disabilities. The life experiences of the chair of a state-level advocacy council demonstrate the problem. A midlife attorney with cerebral palsy, the chair developed urological problems in his early 40s and sought medical help. Trying to find a triangulation of medical expertise in urology, aging, and cerebral palsy has proved frustrating for the past several years. Practitioners with training in cerebral palsy have been pediatricians; urologists with geriatrics training have no experience with the special conditions that cerebral palsy presents.

Innovative Cross-System Partnerships

There should be recognition of the differences and commonalities between lifelong and late-onset disabilities and actions to put into place partnerships among the fields of aging, lifelong disabilities, and late-onset disabilities. The aging, lifelong disabilities, and late-onset disabilities triangle represents a concept whose activation offers opportunities for meaningful collaborations between pairs — that is, between aging and lifelong disabilities, lifelong disabilities and late-onset disabilities, and late-onset disabilities and aging. Those who work in each of the currently separate fields have different histories and constituents, but they and their fields share with the other fields in the triangle notable similarities. These include perennial shortages of personnel, unending need for greater public awareness of their issues and correlated greater public support of their efforts, critical reliance on family caregivers for ongoing care, unsteady funding streams, threats of competition from other worthy causes when appropriations are reduced, and consumers who themselves have complex, concurrent disabling conditions, to name a few similarities.

Aging adults who acquire late-onset disabilities such as dementia personify opportunities for partnership between aging-related and Alzheimer's disease assistance agencies and advocacy groups, just as aging adults with lifelong disabilities who acquire late-onset disabilities such as stroke or heart disease personify opportunities for partnerships among all three sectors of aging, lifelong disabilities, and late-onset disabilities. The benefits to be derived from cooperation could be substantial for the individuals, the families, and the organizations.

At the same time, the aging and disabilities triangle as a concept can be made three-dimensional by adding risk factor prevention groups as another base (e.g., anti-violence, antismoking, anti-drunk driving). For instance, medical technology enables many of the usually young victims of criminal violence or drunk driving to survive the trauma. Many will live the rest of their lives with impairments until they eventu-ally become aging adults with disabilities. It seems judicious to partner to prevent the trauma and to apply the existing resources to the needs of those who already have disabilities.