More MS news articles for Dec 2001

Older and Younger People with Disabilities: Improving Chronic Care Throughout the Life Span

Reviewed and Updated: Nov. 2001

One false step on a cellar staircase, an automobile accident, a stroke, and overnight, any of us could end up with disabilities that make us dependent on others for the simplest tasks. We are all vulnerable to the effects of disability, whether it's a matter of caring for an elderly parent devastated by a stroke, supporting a co-worker who has Parkinsonís, or hearing about a neighbor's baby born with mental retardation.

As the population ages, more Americans will have illnesses and chronic conditions that limit their ability to carry out ordinary tasks--bathing, rising from a chair, opening a window, and walking to the grocery store. With a current life expectancy of 75 years, newborns, today, can expect to experience an average of 13 years with an activity limitation. Because the 85 plus group is the fastest growing segment of the population, many Americans may live with activity limitations for 20 years or more.

Technological and medical advances have made it possible for Americans to live longer but have not been matched by improvements in the delivery of chronic care services. As Chronic Care in America: A 21st Century Challenge, a recent report from the Robert Wood Johnson Foundation, sums it up, "There is no effective system to care for those with chronic conditions in the United States. As a result, much of the care that is available is fragmented, inappropriate, and difficult to obtain."

One in Six Americans Has a Chronic Condition
According to Chronic Care in America, "In 1995, one in six Americans--41 million people-- had a chronic condition that inhibited their lives to some degree." Among the conditions counted are arthritis, cancer, heart disease, diabetes, emphysema, Alzheimer's disease, blindness, hearing impairments, mental retardation, mental illness, cerebral palsy, and spinal cord injuries. The report says, "At least 9 million people with disabilities need help either with personal care or home management (40 percent are under age 65)."

Disability rates increase with age. According to the report, in 1994, nearly 40 percent of the elderly not living in institutions--12 million seniors--were limited by chronic conditions. Of these, 3 million (about 10 percent of all elderly) were unable to perform such activities as bathing, shopping, dressing, or eating.

As disheartening as this picture may be, future cohorts of older Americans are expected to have fewer disabilities than past generations. Findings from the National Long-Term Care Surveys regarding the health and disability status of Americans, conducted by Duke University under the auspices of the National Institute on Aging, show that disability rates among older persons are falling, and this trend is expected to continue.

The number of older persons with functional problems in 1994 was 7.1 million, rather than the 8.3 million who would have been impaired, if the health of older people had not improved. Nevertheless, the growing number of Americans 85 and older means that there will be a continuing and, indeed, growing need for services and supports.

Lifestyle Changes To Prevent Disability
Heart disease accounts for 13 percent of all activity limitations, and injuries cause 13 percent of all disabilities. These two facts, alone, point to the large potential to reduce disabilities by convincing Americans to adopt better nutrition, health and exercise habits and to think ahead about building or retrofitting homes to make them safer and more convenient.

Use of assistive devices rises with age, but this is not true of home accessibility features. It is estimated that one million people nationwide need home modifications and without such changes will remain in unsafe environments or end up in institutions.

One state, Georgia, has already taken the lead in advocating for the design of homes to accommodate disabilities at all ages, a concept increasingly referred to as "universal design." A bill was introduced in the Georgia legislature to require all new homes to have one entrance without steps, door widths of 32 inches to allow for wheelchairs, bathroom walls reinforced to permit installation of grab bars, and easy-to-reach electrical sockets.

In developing this legislation, the Georgia Office on Aging cooperated with disability groups, agencies, and programs, and is working with them on many other projects. Alan Goldman, deputy director of the Georgia Office on Aging, comments, "So many areas overlap when we talk about the long-term care population. The elderly and people with life-long disabilities share so much--the desire to be independent, to have some control over their lives and environments, and to avoid institutionalization."

The frail elderly may have much to learn from younger people with disabilities, including an attitude that refuses to allow society to relegate them to the sidelines and to view them as unfortunate, passive recipients of services. The nationwide network of services to the elderly, led by the U.S. Administration on Aging (AoA), has much to offer the growing numbers of people with life-long disabilities who are living into old age.

Aging and Disability Coalitions Want Shift to Home-Based Care

A National Coalition on Disability and Aging was formed in 1994 and today includes 50 organizations from the disability and aging communities, including the AoA. The Coalition held its first summit on disability and aging before the White House Conference on Aging in 1995.

One of the key objectives of disability and aging coalitions at the federal and state levels is to shift the bias of publicly-funded federal and state programs away from institutional care to home and community-based services. Another is to reverse the medicalization of services to the elderly and to people with developmental disabilities.

According to Chronic Care in America, the direct costs of medical services for persons with chronic conditions amounted to $425 billion in 1990, and 65 percent of those costs were for hospital care and physician services (39 percent to hospitals and 25 percent to physicians).

Home health care expenditures, however, have increased dramatically, rising from $9 to $24 billion between 1989 and 1993, and the number of home health care agencies providing Medicare-reimbursed services doubled between 1979 and 1990. This trend isnít just due to increased use of home health care by elderly people with chronic health problems. It is also due to rules that now send patients home from the hospital "quicker and sicker" to receive services from a home health agency that used to be provided in a hospital.

Services for seniors with chronic conditions, however, are still concentrated in the periods when they need acute care rather than in phases when prevention or rehabilitation services would be beneficial. Costly hospitalizations might be avoided if certain types of services were more affordable and available--transportation to the doctor; installation of railings and ramps; physical therapy to strengthen muscles to prevent falls; education in use of assistive devices; counseling to prevent malnutrition; and provision of home care aides to shop, prepare meals, and assist with personal care.

AoA's Leadership Role

The services most needed by people with disabilities are the kind offered through the AoAís nationwide network of 57 State Units on Aging, 655 Area Agencies on Aging, 221 Tribal Organizations, and some 27,000 service providers. In providing leadership to this network, which was created as a result of the Older Americans Act (OAA), the AoA has focused its energies in recent years on improving home and community-based services for the vulnerable elderly.

Under Title IV of the OAA, the AoA has funded a large number of research, demonstration and training programs in the last decade to strengthen various aspects of the chronic care system and also funded five national resource centers on long-term care. Projects have addressed training hospital discharge workers, support for caregivers, training and certification of homecare workers, rural transportation systems, housing repair and rehabilitation, expanded use of personal emergency systems, mobile health screening and wellness programs, and many other aspects of effective chronic care.

The AoA and the aging network are uniquely suited to assist the nation in strengthening community and home-based services, not only for the elderly but also for persons with life-long disabilities. In fact, State Units on Aging in over half the states are already managing long-term care programs serving both the elderly and individuals with developmental disabilities.

Recently, AoA helped to fund the new National Institute on Consumer Directed Long-Term Services, a partnership between the National Council on the Aging and the World Institute on Disability. Animating this Institute is the philosophy of consumer choice which stresses the importance of enabling consumers to determine the kinds of long-term care services they need.

In a rapidly changing health care system, with more responsibility devolving to the states for Medicaid services and with health maintenance organizations becoming more dominant, older and younger people with chronic conditions need to have a say in how new programs are designed. Working together, the aging and disability networks can make a difference in where and how comfortably Americans spend the last decades of their lives.

Resources. . .
Home Modification Resource Guidelists publications, organizations, and web sites on home modification and adaptive equipment. Available for $12 from the National Resource and Policy Center on Housing and Long Term Care (, Los Angeles, CA, (213) 740-1364.   Many publications of this Center are available on Housing Information for Seniors and their Families ( menu of the AoA web site

A Consumerís Guide to Home Adaptation, $12, Adaptive Environments, 374 Congress St., Ste. 301, Boston, MA 02240, (617) 695-1225.

Center for Universal Design and Accessible Housing Information, North Carolina State University, 1-800 647-6777.

A Guide to Federal Programs for People With Disabilities, mainly for professionals, National Academy for State Health Policy, (207) 874-6525.

The U.S. Department of Educationís National Rehabilitation Information Center (, 1-800-346-2742, provides information to professionals and the public regarding rehabilitation of persons with physical or mental disabilities.

American Academy of Physical Medicine and Rehabilitation (, Suite 500, One IBM Plaza, Chicago, IL 60611, (312) 464-9700, provides physician referrals to the public and information to health care professionals.

Additional information is available from:

Administration on Aging
U.S. Department of Health and Human Services
330 Independence Avenue, SW
Washington, DC 20201

Telephone: (202) 619-0724
TDD: (202) 401-7575
Fax: (202) 260-1012
Internet Web Site:

Source: Medscape Health

Copyright: © 1999-2001 Medscape, Inc.