Dealing with Disability
Disabilities will touch nearly everyone in some manner. Here’s a plan for preparing the nation for this future, but choices should not be put off.
Between 40 million and 50 million people in the United States—at least one in seven residents—currently report having some kind of disability that limits their daily activities or restricts their participation in work or social life. Given current trends, this number probably will grow significantly in the next 30 years as the Baby Boom generation enters late life, when the risk of disability is the highest. But disability is not destiny for either individuals or the communities in which they live; it is not an unavoidable result of injury and chronic disease. Rather, disability results, in part, from choices society makes about health care, working conditions, housing, transportation, and other aspects of the overall environment. Positive choices made today not only can prevent the onset of many potentially disabling conditions but also mitigate their effects and help create more supportive physical and social environments that promote increased independence and integration for people with disabilities.
However, the nation has a less than stellar record in making such positive choices. The enactment in 1991 of the Americans with Disabilities Act (ADA), a landmark law, has contributed to a significant increase in the understanding of disability, its causes, and strategies that can prevent its onset and progression. Nonetheless, implementation and enforcement of the ADA have often been disappointing. Many barriers remain, in health care facilities, workplaces, public spaces, transportation, and elsewhere, that limit the extent to which people can live independently and be involved in their communities. Important federal programs, including Medicare and Medicaid, and many private health plans continue to employ outdated policies for covering technologies and services that can benefit people with disabilities. Research spending on disability remains inadequate. The result is a diminished quality of life for people with disabilities, increased stress for them and their families, and lost productivity. It is essential for the nation to take action, sooner rather than later, to avoid a future of harm and inequity and instead to improve the lives of people with disabilities.
In April 2007, the Institute of Medicine (IOM) issued The Future of Disability in America, which lays out an array of recommendations that can inform the nation’s collective actions. The recommendations center on four general topics: disability monitoring, access to health care and other support services, public and professional education, and disability research.
What is a disability?
One step in developing and applying policies and programs that prevent or limit the impact of disability is to develop a definition of disability that helps in evaluating the extent of disability in the United States, monitoring change, and identifying continuing problems. In the past half century, the understanding of disability and the language used to describe it have changed dramatically. Certain language (for example, “handicapped worker”) has largely disappeared. And disability is increasingly being understood as an interaction between the individual and the environment. The ADA and various other public policies reflect this understanding, with varying degrees of success, as they seek to reduce or eliminate environmental and other barriers to independence and community integration. Still, the absence of universally accepted and understood terms and concepts with which to describe and discuss disability continues to be a major obstacle to consolidating scientific knowledge about the circumstances that contribute to disability and the interventions that can prevent, mitigate, or reverse it.
As the basis for a common language of disability, federal agencies involved in monitoring disability, including the National Center for Health Statistics, the Census Bureau, and the Bureau of Labor Statistics, should adopt the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) as their conceptual framework. Developed by multiple stakeholders, including people with disabilities, the ICF attempts to provide a comprehensive view of health-related states from biological, personal, and social perspectives. Greatly simplified, the ICF starts with the concept of a “health condition,” a general term for a disease, disorder, injury, trauma, congenital anomaly, genetic characteristic; even aging. This condition forms the basis for the possible development of a disability in the form of an “impairment, activity limitation, or participation restriction.” The ICF then takes into account the dynamic interplay of the health condition with a richly interlaced set of environmental and personal factors; it is such interactions that help determine whether or not an impairment, limitation, or restriction occurs.
The ICF is by no means perfect, and the IOM report spells out various directions for improvement. For example, the framework should incorporate “quality of life” considerations, more fully develop the personal and environmental factors that influence the outcome of potentially disabling health conditions, and better depict functioning and disability as a dynamic process. The Interagency Subcommittee on Disability Statistics of the Interagency Committee on Disability Research should coordinate federal efforts to develop, test, validate, and implement new measures of disability that correspond to the components of the ICF. But even as a work in progress, the ICF would enable the various agencies to standardize how they describe and measure different aspects of disability, which would help improve the clarity and comparability of research findings and strengthen the base of scientific knowledge that guides public policies and health practices.
On a broader scale, the government should develop a national disability monitoring (surveillance) program. Today, disability statistics must be patched together from multiple, often inconsistent, surveys in order to cover people of all ages and in all living situations; and even then, gaps often remain. Lack of a comprehensive monitoring program, first pointed out by the IOM in a 1991 report and again in a 1997 report, remains a serious shortcoming in the nation’s health statistics system. The National Center for Health Statistics, which is part of the federal Centers for Disease Control and Prevention (CDC), should spearhead development efforts. As one priority, the agency should develop a new panel survey of disability as a supplement to the current yearly National Health Interview Survey. Panel surveys monitor the same individuals over several years or even decades, making them particularly useful in understanding the dynamic nature and natural course of disability, including risk factors for the onset of disability and factors that influence recovery from the disability. The survey should include people living at home and in institutional settings, and should oversample children and younger adults in order to help fill the current major gaps in knowledge about disability among these age groups.
Among its benefits, improved monitoring would provide researchers and policymakers with better insight into trends in disability. Trend data can provide a barometer of the nation’s achievements in terms of disability prevention, such as the elimination of environmental barriers to participation in various daily activities. Also, when trend data include measures of social, medical, and environmental risk factors, they can point policymakers to effective strategies for future interventions that will prevent or limit disabilities.
As another monitoring priority, better data are needed on the employment status of and economic opportunities for people with various kinds of limitations. Employment and economic security are central issues for the independence and community integration of people with disabilities. Thus, it is important for the Bureau of Labor Statistics to include core disability measures in its Current Population Survey and for the Census Bureau to include such measures in its re-engineered survey in the Dynamics of Economic Well-Being System that is slated to replace the Survey of Income and Program Participation.
In recent decades, a variety of technological innovations and advances in biomedicine, coupled with shifts in attitudes about disability and legislative and regulatory changes, have helped to reduce or mitigate some of the environmental barriers that can hinder a person’s opportunity to participate in everyday community life and that thus create disability. For example, getting around the community and traveling beyond it are becoming easier for many people with disabilities because of the ADA’s barrier removal and accessibility requirements and other policies. Technological advances and reforms of telecommunications regulations have made it easier for people with vision, hearing, and other impairments to communicate electronically with clients, coworkers, friends, family, and others. Various other types of assistive technologies are making it easier for people to maintain or increase their functional capabilities. More attention is also being paid to strategies for designing universal and accessible mainstream technologies that aim to create, from the outset, physical environments and products that are easily used by and accessible to as wide a range of potential users as practicable. Despite progress, however, substantial environmental barriers remain, and their persistence will only become more serious as the number of people at the highest risk of disability grows substantially in coming decades. Ironically, many barriers still persist in hospitals and physicians’ offices, which too often lack equipment and services suitable for people with physical mobility, sensory, or other impairments. Thus, it is crucial to improve the accessibility of health care facilities and strengthen implementation of the ADA related to such facilities. Both public and private groups have a role to play. The Department of Justice should strengthen enforcement of the ADA and publicize effective settlements, and it should offer health care providers better guidance about their responsibilities under the act. Similarly, the Joint Commission and other organizations that accredit health care facilities should consider a facility’s level of compliance with accessibility standards and guidelines in their accreditation decisions. In addition, Congress should direct the Architectural and Transportation Barriers Compliance Board (known as the Access Board) to develop standards for accessible medical equipment and to see that the appropriate federal agencies disseminate information about the standards and enforce their implementation.
The government should also act to reduce barriers to health insurance for people with disabilities and to make needed assistive technologies and services more available. Although people with disabilities are slightly more likely than others to have health insurance, often through public programs, access to insurance is not universal, especially among working-age individuals. As one step, for working-age people who are newly qualified for Social Security Disability Insurance (SSDI), Congress should reduce or eliminate the current 24-month waiting period before they can start receiving Medicare benefits. Many such individuals have no insurance during this period and face financial or medical ruin. In addition, Congress and administrative agencies should continue to test modifications in SSDI and Supplemental Security Income rules that would encourage people who are able to return to work to do so without losing Medicare or Medicaid coverage.
To foster increased use of assistive technologies and services, federal policymakers should eliminate or modify the current Medicare requirement that durable medical equipment must be “appropriate for use in the home” in order to be covered. This provision keeps many people from obtaining wheelchairs or scooters that would enable them to navigate reliably and safely outside the home. Criteria for covering such technologies should consider their effects on an individual’s independence and participation in the community, including employment. Policymakers also should rethink narrow and outdated definitions and regulations that authorize Medicare coverage only for “medically necessary” items and services. These definitions and rules have often proved troublesome for people with disabilities seeking coverage of assistive technologies and personal care services. For example, they may be invoked to deny payment for nonmedical services, such as assistance with bathing, or for products, such as bathroom grab bars, that help people manage daily life efficiently and safely. Denials of claims for assistive technologies and services based on the failure to meet medical necessity criteria are disheartening and confusing and reduce people’s ability to function at home and in the community.
Gaining access to health services often proves especially difficult for young people with disabilities as they move from pediatric or adolescent to adult health care. This transition can be a complex process that is influenced by the characteristics of the young person, his or her family, and, in particular, the larger environment of policies and organizational arrangements that affect the availability and coordination of health care services, the sharing of health care information, and the support provided by schools and social services available in the community. To smooth the transition, policymakers, professional societies, public and private payers, and educators should work to align and strengthen incentives in public and private health care programs to support coordinated care and transition planning and to expand the use of integrated electronic medical records for chronic disease management. One particular challenge that young people face is their loss of eligibility for public or private health coverage at age 18, in many cases, or sometimes at age 21. Congress should extend Medicaid and State Children’s Health Insurance Program (SCHIP) coverage through age 21 for young people with disabilities and specify that such benefits cover their transition assessment, coordination, and management services. Among other actions, Congress also should fund the Maternal and Child Health Bureau so that it can expand its work to develop and implement medical home and other services for young people with special health care needs who are over 21 and who need continued transition support.
Although people with disabilities often receive care from rehabilitation specialists, they also depend on other health care professionals for primary care and various other services. But these professionals are not necessarily well informed about proper primary care for people with disabilities, the problems these people face as they age, the barriers that the current health care system creates, and the ways in which assistive technologies can enhance people’s independence and productivity. Schools of medicine, nursing, and allied health should respond to this deficit by providing their students with better education about disability and care for patients with disabilities. Again, a well-educated health care workforce will become ever more critical with the expected growth in the numbers of people aging with disability or aging into disability. The building of a knowledge base should begin early in a clinician’s education and training and be reinforced through direct clinical experience with people with disabilities. Even health professionals who do not plan to routinely care for patients with disabilities still need a basic foundation of knowledge and skills. They also need support systems to guide them in providing timely and accessible preventive care services, help them in preventing secondary medical problems that arise from a patient’s primary health condition, and encourage them to properly refer patients with disabilities to experts with more specific knowledge when appropriate.
It is clear, too, that physicians and other health professionals would welcome evidence-based reviews and well-crafted, evidence-based guidelines for practice that will help them maintain and update their knowledge and skills for managing patients with disabilities, especially as their patients age or develop secondary health conditions. Toward this end, educators and health care professionals, working with people with disabilities and their families, should develop education modules and other curriculum tools to help educate professionals throughout their careers to care for people with disabilities. These groups should also develop consensus competency standards that accreditation and licensing boards can use to evaluate health professionals’ skill levels.
Educational efforts are also needed to inform health care professionals, as well as consumers, about the range of assistive technologies and accessible mainstream technologies now available, and the benefits they offer. Health care professionals do not have to become experts in the technologies; rather, they need to know, in general, what exists that might help their patients or clients and what basic features of a technology are important for a given patient. Given the current knowledge gap, the CDC, working with the National Institute on Disability and Rehabilitation and Research, should launch a major public health campaign to increase professional and consumer awareness and acceptance of assistive technologies and accessible mainstream technologies that can benefit people with different kinds of disabilities.
The consumer component of the campaign not only would impart knowledge about the various technologies, but also would help people assess whether they have developed functional deficits for which helpful products exist. It would also provide guidance on finding sources of financial assistance for purchasing products. In some cases, evidence suggests that although people may be aware of certain products, they consider the products unattractive or stigmatizing, which can be a major barrier to their use. A large-scale, long-term public media campaign may help publicize more appealing technologies and convey that it is normal to use “smart” technologies to make life better. Promotions might show celebrities using technologies and natural-looking aids. Another strategy might be to persuade the producers of popular television programs to show the unobtrusive routine use of assistive technologies. The idea would be to help people feel more comfortable using technologies that may enable them to live independently longer or to stay with their families longer by reducing the amount of informal caregiving needed. If the campaign identifies product design as a continuing problem, then that knowledge also can guide contacts with designers and manufacturers about how to modify the products to reduce this barrier.
Despite the personal and societal impact of disability, the federal government’s budget for research in this area remains modest at best, falling far short of needs. Funding for the National Institute on Disability and Rehabilitation Research, the National Center for Medical Rehabilitation Research, and the Veterans Health Administration Rehabilitation Research and Development Service has barely increased over the past decade and is a miniscule portion of the federal research budget. As an overarching goal, the government should commit to funding a program of clinical, health services, social, behavioral, and other disability research that is commensurate with the need.
The government also should strengthen the management and raise the profile of disability research within federal research agencies. To do so, the government should consider elevating the National Center for Medical Rehabilitation Research to the status of a full institute or freestanding center within the National Institutes of Health, with its own budget. Similarly, establishing an Office of Disability and Health in the director’s office of the CDC would help to more fully integrate disability issues into the CDC’s programs. In addition, the government should take stronger steps to ensure that the various agencies involved in disability research coordinate their activities in order to reduce wasteful duplication of effort and better identify neglected research issues.
Among the priority areas for expanded research efforts, federal agencies should invest more in developing, testing, and disseminating promising interventions that will help people maintain their independence and ability to function in community life. For example, investigators have identified a number of risk factors related to the onset of disability at birth and throughout the life span, as well as promising interventions to overcome these factors. In childhood, risk factors include living in socioeconomically disadvantaged families and in households with exposures to environmental toxins. In late life, risk factors include low frequency of social contacts, a low level of physical activity, smoking, and vision impairment. Still, many gaps remain in the knowledge base for practices and programs to reduce environmental barriers that contribute to disability, and translating the findings of social and behavioral research into practice remains a formidable challenge.
Government agencies also should support additional research to identify better strategies for developing and bringing to market new or improved assistive technologies and accessible mainstream technologies. Research needs to focus not only on high-tech technologies but also on more common low-tech equipment such as improved walkers. In formulating this research, government should involve consumers, manufacturers, and medical and technical experts, among other interested parties. Additionally, research is needed on the role of legislation, including existing policies such as the ADA and the Rehabilitation Act, in providing incentives to industry by enlarging the market for acces sible technologies.
Given current demographic, societal, and disability trends, how will the nation make the choices that will help define the future of disability? In the coming decades, as the number of people living with disabilities continues to increase, costs for health care and related services will increase across the board. Concurrently, society will face pressure from other sources of increasing health care costs, which have consistently grown faster than the gross domestic product. Individuals and families will bear a significant share of the increasing costs and of the noneconomic costs as well. Rising costs will also stress federal and state governments, which are responsible for Medicare, Medicaid, SCHIP, and other critical programs.
Projections of future spending increases for government programs raise the prospect of difficult tradeoffs, such as reduced funding for other purposes, or higher taxes, or both. Reducing inefficiency and the inappropriate use of health care services will help, but such reductions are unlikely to eliminate the need for the difficult choices that policymakers recognize need to be made but are, in large measure, delaying.
How the nation ultimately makes choices about future spending will reflect collective fundamental values about the balance between community and individual responsibility. Still, both society and individual citizens should recognize that health, social, and other policies that assist people with disabilities do not represent only current transfers of resources from those without disabilities to those with disabilities or from mostly younger people to mostly older people. Over their life spans, the majority of U.S. residents will experience disabilities or will have a family member who does. People may not realize it, but the support they give today for policies that affect future funding for disability-related programs is a statement about the level of support they can expect to receive at later stages in their own lives. In such a light, providing adequate funding for these programs seems only a prudent investment.
Marilyn J. Field ([email protected]) was study director and Alan M. Jette ([email protected]), director of the Health & Disability Research Institute at Boston University, was the committee chair for the Institute of Medicine’s report The Future of Disability in America.