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A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability

June Isaacson Kailes*

People with significant disabilities and chronic conditions are aging and living much longer than they did in previous generations. Since we are not dead yet, the question is not, will we live; the question is, how well will we live? We need health care that helps us add life to years, not just years to life. Today’s disability-specific health care treats many who live with a long-term disability as if we cease to exist after childhood or after acute or rehabilitation interventions.

We confront a “black hole” when seeking disability competent services. Our options in our quest for experienced professionals and comprehensive services are few. Our choices, if we are lucky, are to see pediatrics-focused health care professionals with teddy bears on their business cards or geriatrics-focused health care providers who sometimes incorporate a multidisciplinary team approach.

I write this paper from the perspective of someone who is a living, aging-with-disability “laboratory.” My life-long disability is cerebral palsy. I am also a breast cancer survivor. My work in health, wellness, and aging with disability bridges the consumer and the provider worlds. Several decades of concentration on health as an advocate, writer, educator, consult-

*  

June Isaacson Kailes, Associate Director, Center for Disability Issues and the Health Professions, Western University of Health Sciences, Pomona, California. The analyses and views presented in this workshop paper are those of the author and not necessarily those of the Institute of Medicine Committee on Disability in America: A New Look.



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Workshop on Disability in america A new look: Summary and background papers K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability June Isaacson Kailes* People with significant disabilities and chronic conditions are aging and living much longer than they did in previous generations. Since we are not dead yet, the question is not, will we live; the question is, how well will we live? We need health care that helps us add life to years, not just years to life. Today’s disability-specific health care treats many who live with a long-term disability as if we cease to exist after childhood or after acute or rehabilitation interventions. We confront a “black hole” when seeking disability competent services. Our options in our quest for experienced professionals and comprehensive services are few. Our choices, if we are lucky, are to see pediatrics-focused health care professionals with teddy bears on their business cards or geriatrics-focused health care providers who sometimes incorporate a multidisciplinary team approach. I write this paper from the perspective of someone who is a living, aging-with-disability “laboratory.” My life-long disability is cerebral palsy. I am also a breast cancer survivor. My work in health, wellness, and aging with disability bridges the consumer and the provider worlds. Several decades of concentration on health as an advocate, writer, educator, consult- *   June Isaacson Kailes, Associate Director, Center for Disability Issues and the Health Professions, Western University of Health Sciences, Pomona, California. The analyses and views presented in this workshop paper are those of the author and not necessarily those of the Institute of Medicine Committee on Disability in America: A New Look.

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Workshop on Disability in america A new look: Summary and background papers ant, researcher, and health care professional allow me to speak not only from my own experience but from the experiences of many people who are aging with disability. I, like many of my peers, had an early introduction to the so-called golden years and the aging experience, what our disability subculture sometimes refers to as “crip (short for crippled) years.” When I talk with older people without disabilities about their aging experiences, I often identify with what they describe and think to myself, “I’m already there!” There is progress in identifying secondary and associated conditions specific to aging and living with a disability. However, this work has not translated into effective interventions. For many of us, maneuvering through the complex health care system is a dense minefield full of physical, communication, program, and medical equipment barriers; “no-logic” bureaucracies; professionals with few, if any, specific competencies in treating disabling conditions; fragmented and dysfunctional services; and a lack of focus on living well with long-term disability and conditions. It is a system lacking any semblance of disability-related literacy, competency, and clinical expertise. Successful navigation of the system takes enormous energy, razor-sharp advocacy, and considerable health literacy. These are necessary survival skill sets that few people have and that only a few more are able or willing to acquire. The comments in this paper cover recommendations regarding planning “with” and not “for” people with disabilities, defining disability, the law, tracking progress, health policy and benefits, and research priorities. PLAN WITH US AND NOT FOR US Planning for and not with people with disabilities reflects an old paradigm: “a lot about us without us.” People with disabilities need to be involved not in token ways (not just advisory) but in major significant and powerful ways. It is important to include in the research and practice processes qualified people with disabilities who understand and who can think through issues from a cross-disability perspective. Qualified people with disabilities should be included as investigators, contributors, collaborators, and managers. People with disabilities also need to be included, not excluded, from randomized clinical trials that test the effectiveness of interventions such as new medications and surgical procedures. It is time to embrace the approach “nothing about us without us!” Being diligent in seeking qualified people with disabilities and taking ad-

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Workshop on Disability in america A new look: Summary and background papers vantage of the wealth, depth, and breadth of information available from the disability community yields positive payoffs. DEFINE DISABILITY BROADLY The 2000 U.S. census found that people with disabilities represent 19.3 percent of the 257.2 million people age 5 years old and older in the civilian noninstitutionalized population, or nearly one in five people. By adopting a broad definition of disability, no one is left behind when the broad spectrum of people with disabilities and activity limitations is included. Preparing to accommodate people with disabilities often translates into being better equipped to serve all people. Given the approaching wave of the baby boom generation, people who live with disabilities today are truly “the canaries in the health care mine.” As people age, disability rates rise significantly. Most people, if they live long enough, will age into disability. As time alters our bodies, activity and functional limitations become natural occurrences. Medical, technology, legal, and social advances keep more people with disabilities, chronic conditions, and activity limitations alive, healthy, productive, and functioning independently in their communities. Do not think of disability as a condition that affects the “special” or the “unfortunate few.” Disability is just one variation on the diversity of being human, and it is a common characteristic and occurrence within the human experience. The concept that people either have a disability or do not have a disability perpetuates misperceptions about the nature of disabilities and activity limitations. Disability should not be viewed as something you have or you don’t have. Activity limitations exist along a continuum of gradation and duration (partial to total or temporary to permanent) that affect almost everyone at some point in their lives. Traditional narrow definitions of disability are not appropriate. Governmental departments and policies have 60-plus different definitions of disability. That problem must be resolved. We need to think about disability more broadly, as people with disabilities and other activity limitations make up a sizable portion of the general population. Disability should be defined functionally in a unified and comprehensive way. IMPLEMENT THE LAW I, along with many others, have spent 15 years working to implement the Americans with Disabilities Act (ADA). The positive payoffs of this law in our environment are apparent and significantly contribute to helping people with disabilities be productive. The level of implementation of ADA

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Workshop on Disability in america A new look: Summary and background papers in health care, however, lags far behind its level of implementation in many other public accommodation sectors. The health care system overlooks its obligation to ensure compliance with ADA. Inadequate compliance is a major contributor to many of the documented health disparities that people with disabilities experience. Compliance involves not only attention to physical access but also attention to accessible medical equipment, communication, and programs. Medical equipment that needs to be usable by people with disabilities and activity limitations includes weight scales, examination tables (whose height should be adjustable), examination chairs, and other diagnostic and radiological equipment that facilitates access to routine care, preventive care, diagnostic tests, and necessary treatments. When a physician is unable to perform an appropriate examination or get an accurate weight because a patient cannot use a traditional scale or cannot get onto or is not assisted with getting onto an examination table, then the patient may receive a lower quality of health care. The patient might receive an inaccurate diagnosis because the physician may not have sufficient information. A patient with a disability or activity limitations might miss the benefit from the early detection and treatment of a developing condition as a result of the lack of availability of accessible medical equipment. Accessible communications provide explanations, directions, and other content by means that are understandable and usable by people with reduced or no ability to speak, see, or hear or who have cognitive limitations in learning and understanding. Physical access means removing physical barriers so that people can get to, enter, and use parking (curb cuts, ramps), examination, treatment, dressing, rest rooms, and other facilities. Depending on the facility and its location, creating access may mean the installation or construction of ramps, automatic door openers, curb cuts, widened doorways and exam and treatment rooms, and accessible and safe pathways from parking and public transit stops. Program access refers to services, programs, or activities that, when viewed as a whole, are accessible to and usable by people with disabilities. In addition to altering facilities, equipment, and communication methods, programs may assign personnel to assist individuals with disabilities and provide services at alternative sites if primary sites cannot be readily used so that those programs are accessible. One step in strengthening accessibility for people with disabilities is stronger ADA-related enforcement and training efforts in all areas of health care. In addition, clearer and stronger tax incentives could encourage health

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Workshop on Disability in america A new look: Summary and background papers care providers to improve access. Although much is known about how to improve access, an area that needs attention and resources is the development and enforcement of standards for accessible medical equipment. ESTABLISH A BASELINE We must clearly document the progress that has been made since the Institute of Medicine (IOM)’s publication of Disability in America in 1991 (Pope and Tarlov, 1991) and Enabling America in 1997 (Brandt and Pope, 1997). What has been accomplished in what areas? What are the significant findings? What has made a difference in peoples’ lives? To be effective, it is critical that we use evaluation and progress tracking tools. We need a report card that tracks progress. REFORM HEALTH CARE POLICIES AND BENEFITS Many of the following policy comments reflect an underlying message: “pay now or pay more later.” An initial denial of services because of antiquated and shortsighted policies and inaccessible medical facilities and equipment subsequently results in the use of more expensive services downstream. Health care policies that affect the access to health care of people with disabling conditions and activity limitations originate from an era when many people with disabilities did not age; they just died. Some of these policies focus primarily on preventing fraud and abuse. Policies and benefits specific to the definition of medically necessary, access to technology, care coordination, and evaluations need to be updated to reflect the current needs of people aging with activity limitations. Medical Necessity Definitions and interpretations of “medical necessity” play a critical role in determining what services people receive. Existing practices of denying needed services leads to short-term savings and long-term costs. Policies must change to incorporate into this definition the prevention of decline and deterioration, in addition to the significant improvement of health status. For example, coverage should allow people with disabilities or activity limitations to obtain, maintain, and repair the right technology and to receive periodic evaluations by physical, occupational, and exercise

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Workshop on Disability in america A new look: Summary and background papers therapists and those who provide other ancillary services that help prevent or mitigate functional loss. Technology Coverage of and access to the right technology translate into living better and longer. The question remains, given today’s health care, how do you get it? The pivotal role that assistive technologies and durable medical equipment (DME) play in preventing or reducing secondary conditions and injuries must be recognized. This includes, but is not limited to, hearing aids, grab bars and other safety devices, railings, canes, magnifiers, buttonhooks, speech synthesizers, augmentative communication devices, powered mobility devices, magnification equipment, sophisticated prosthetic limbs, environmental control units, powered and lightweight wheelchairs, and voice-output blood glucose meters. These kinds of devices play a critical role in helping people with activity limitations of all ages maintain or improve their overall health and mental health, participation, independence, productivity, and integration in the home, in the classroom, in the workplace, and in the community. This technology helps prevent costly medical problems due to mental or physical deterioration (like depression, pressure sores, and injuries) as well as help reduce personal assistance costs. Continuing to view wheeled mobility equipment as a “convenience item” is absurd. As I recently explained to Blue Cross (to make the case for reimbursement for yearly scooter batteries and several other small items that would continue to extend the life of my 15 year old, chronically airline-abused scooter), “I am not using this scooter to make a fashion statement!” Shortsighted policies that allow payment only for stripped-down, noncustomized, and sometimes inexpensive devices like heavy manual wheelchairs cause preventable problems downstream, like upper-extremity injuries and pressure ulcers whose treatment requires high-cost interventions. The denial of coverage for wheelchair cushions can mean a payment of $50,000 to surgically repair a pressure sore later. The denial of coverage for low-cost grab bars may mean the expensive treatment of broken bones and other injuries later. Public and private payers must recognize improvements in function and prevention of primary and secondary injuries when they determine whether assistive devices, technologies, and related services are “medically necessary.” Increased federal funding must be committed to build the evidence base on the efficacy and cost-effectiveness of coverage of these devices and services. Centers for Medicare and Medicaid Services must change Medicare’s antiquated “in-the-home” wheelchair coverage policy, which restricts cov-

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Workshop on Disability in america A new look: Summary and background papers erage of mobility devices only to those devices that are reasonable and necessary for use inside a person’s home. By denying a basic mobility tool, this restriction is more costly in the long run and limits the independence, health, and community integration of people with disabilities who rely on wheelchairs to function outside of their homes. Many people like me can get around their homes by “wall walking” and “furniture surfing” or by using a standard-issue manual wheelchair, cane, or walker. Outside the home, however, these methods are unsafe and confining. Many of us could easily have been in the group of people whose benefits deny them access to liberating technology. The antiquated policy restrictions and interpretations cited above continue to unnecessarily confine, imprison, devalue, and oppress people with disabilities of all ages by compromising our health, independence, self-sufficiency and social connections; increase health and safety risks (and the development of conditions such as those associated with isolation); and increase the cost of treating often predictable and preventable downstream conditions that are already expensive to treat (and which are, ironically, covered by public and private insurance with little question). Care Coordination Make available high-quality, clinically competent care coordination for people who need assistance navigating the health care system. For example, people with multiple and complex health issues, including individuals who are living with several conditions, such as emphysema, diabetes, heart conditions, obesity, arthritis, and high blood pressure, are often overwhelmed and lost in a fragmented system. Elements of care coordination of particular importance to many people with disabilities include fostering of a person-centered approach that honors the goal of achieving maximum self-determination while supporting independent living values, such as dignity, independence, individuality, privacy, and choice. Comprehensive Health Evaluations Disincentives that limit health care professionals’ ability to offer comprehensive evaluations should be eliminated. Comprehensive health evaluations are available only for the elite chief executive officers. These are evaluations that many people would benefit from and welcome. However, the consequences and downstream costs of not periodically offering them

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Workshop on Disability in america A new look: Summary and background papers to higher-risk people living and aging with disabilities are much more significant. These evaluations are important, because individual needs, readiness, and timing for the incorporation of technology and adaptive strategies techniques change. The information learned in an express and compressed rehabilitation stay or outpatient visit often needs to be reinforced, refreshed, revisited, and enhanced. The need is the same for people who have life-long disabilities as well as people who acquire disabilities later in life. Public and private insurance should cover comprehensive, periodic, coordinated, timely screenings, evaluations, and services tailored to the individual’s age, sex, disability, chronic conditions, lifestyle, and personal history. What is described here is the ideal model. Even small steps toward the implementation of this model would indicate progress. In the ideal world, such evaluations should include a single-visit, one-stop evaluation that focuses on routine screening, improving functional capacity, and preventing decline and deterioration. Evaluations should center on the whole person and should consist of assessments by a multidisciplinary team of health care professionals who effectively solve problems together (as needed, a nurse, physician, physical therapist, occupational therapist, orthotist, social worker, mental health professional, care coordinator, fitness specialist, dentist, optometrist, and others); technology-specific tune-ups, which involve health education; preventive strategies regarding repetitive stress; and muscle underuse, overuse, and misuse injuries; as well as any safety product recalls; nutritional and fitness assessments; an optional on-site workplace assessment that covers areas such as seating and ergonomics; assessments and plans for preventing known health complications secondary to a disability and for preserving functional abilities with a focus on anticipating how such abilities may change with age; an easy-to-understand report that is given to the patient along with an individual health and wellness plan that is reviewed annually, revised as needed, and developed in partnership with the individual and the health care team; and fully funded follow-up services for the individual’s health and wellness plan. One specific example of the kind of up-to-date evaluation and information that such an approach would offer involves rehabilitation education for those using a wheelchair. A person would be informed that transferring from the wheelchair to a car by swinging one’s body while holding onto the

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Workshop on Disability in america A new look: Summary and background papers doorframe is a technique that will eventually cause significant shoulder pain. The person would review newer and less physically costly techniques in person, and these techniques would be augmented with reinforcing written and audiovisual materials. BUILD THE SCIENCE BASE If science does not focus on the intersection among the body, the environment, and health care policy, the enduring contributions will fall short. I can tell story after story illustrating aging with disability-specific problems, but anecdotal data do not carry much weight. Without respected data, we are just advocates with opinions. A national large-scale epidemiological study of people with disabilities (similar to aging studies) is needed. Such a study should receive multi-disciplinary, multicollaborative, and multiagency funding. In addition, research needs to validate or disprove the merits and cost-effectiveness of periodic comprehensive evaluations; be reality based and focus on what can be accomplished to improve care given limited health care resources; focus on methods and models that will help reorient and transform the approach in health care that too often equates disability, chronic conditions, and activity limitations with an inability to work; focus on the prevention and mitigation of secondary and associated conditions; the research (reviewed by others) documents the prevalence of common secondary conditions like pain, depression, obesity, and fatigue across disability groups; focus on functional limitations; given the complexity and diversity of disability and the low prevalence of many conditions, research should focus on functional limitations across disabilities and not discrete diagnostic groups (for example, people with cerebral palsy have some characteristics in common, but variations in abilities and limitations manifested in vastly different ways are more common); there are common functional limitations that need attention across groups with different types of disabilities; incorporate cost-effectiveness and health economics components; this sometimes gives advocates the additional data that they need to make the case for improving health care policies and interventions; reduce the time between the use of common practices and the implementation of best practices; be coordinated across relevant federal agencies; guard against the “silo” effect by infusing disability content throughout other, nondisability-focused health research, for example, the array of institutes and centers at the National Institutes of Health; and

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Workshop on Disability in america A new look: Summary and background papers BOX K-1 Directions for Research on Health Living with a Disability Do individuals who acquire disabilities at different ages in the life cycle differ in the types, frequencies, and numbers of chronic health conditions that they experience after the onset of their primary disability? What are the differences, and which groups are at the greatest risk? What is the effect of exercise on preventing increasing levels of disability among individuals with specific types of disabilities? Does participation in certain kinds of sports for people with physical disabilities accelerate musculoskeletal difficulties? What steps should be incorporated in the early years of a disability to prevent or reduce future musculoskeletal problems? Is “use it or lose it” a sound strategy, or would voluntary curtailment of the intensity and scope of certain activities at an early age translate into fewer musculoskeletal difficulties in later years? What trade-offs need to be considered early in life, e.g., the rigors of walking with crutches and the upper-extremity muscle deterioration that it may cause as opposed to using a wheelchair, particularly if one’s career depends on upper-extremity muscles? What are the long-term effects of disability-related physical and drug therapies and surgeries? Will osteoporosis become a major problem for people with physical disabilities? Should screening for osteoporosis occur earlier for people with mobility disabilities than for people without disabilities? What interventions are effective? When should they start? What strategies regarding aging well with a disability could be adopted from sports medicine, because the analogy is that many people with physical disabilities use their bodies more like athletes than other people? Could people benefit from this knowledge with regard to exercise, diet, assistive devices, medication and energy conservation? What is the impact of exercise and activity on the functional independence and overall health status of individuals with physical disabilities? give greater focus to ways of promoting healthy living with a disability that have direct, immediate, and practical applications. Box K-1 includes some questions about aging with a disability—which I have collected from my peers—that could be integrated into this research. Research focused on DME, assistive technologies, and related services should emphasize several topics. These include determining if there is an evidence base regarding the efficacy and cost-effectiveness of coverage; determining how devices improve functional ability and reduce costs by decreasing pain and wear and tear on joints;

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Workshop on Disability in america A new look: Summary and background papers studying if there are long-term savings and costs related to paying for customized technology; exploring whether strategies for the prevention of secondary conditions should accompany the delivery of various types of DME (e.g., whether, when wheeled mobility is prescribed, overweight and obesity prevention services and guidance on how to protect overused muscles and joints should be part of the service package); determining if coverage for repairs to a device, as well for training regarding the use and maintenance of a device, extends the life of the device and reduces its replacement cost; reducing the weight, size, and costs of devices and improving their ease of operation; documenting whether there are any differences between the use of customized assistive technology and noncustomized assistive technology in long-term physical and financial costs; and documenting or disproving the existence and scope of the “woodwork effect.” Resistance to modernizing policies is often based on fear of the so-called woodwork effect. That is, if more generous benefits are available, unimaginable numbers of beneficiaries will emerge “from the woodwork” to seek the service. Is there any validity to the use of the woodwork effect by policy makers and insurance carriers as an excuse not to improve policy? Is this an excuse that actually costs more in the long run? THE CHARGE TO IOM For me and my peers, this updating of Disability in America by IOM is serious business. It is about “getting it right” in areas that are essential to our health and independence. It is about giving many of us the tools and services that we need to keep going, to be productive, and to prevent the world from unnecessarily closing in on us and becoming confining. It is about translating the words and the mantras like “quality living in the community” into reality. Life is short, so be productive and focus on converting the words to reality so that they do not remain empty promises. REFERENCES Brandt EN Jr., Pope AM, eds. 1997. Enabling America: Assessing theRole of Rehabilitation Science and Engineering. Washington, DC: National Academy Press. Pope AM, Tarlov AR, eds. 1991. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academy Press.