http://health.medscape.com/cx/viewarticle/203570
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 Parkinson’s, 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
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
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 isn’t 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 AoA’s 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. . .
A Consumer’s 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 Education’s
National Rehabilitation Information
Center (http://www.cais.com/naric/), 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 (http://www.aapmr.org/),
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
Telephone: (202) 619-0724
Source: Medscape Health
Copyright: © 1999-2001 Medscape,
Inc.
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)."
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.
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 (http://health.medscape.com/cx/housing/PubList.html),
Los Angeles, CA, (213) 740-1364. Many publications of this
Center are available on Housing
Information for Seniors and their Families (http://health.medscape.com/cx/housing/)
menu of the AoA web site
U.S. Department of Health and Human
Services
330 Independence Avenue, SW
Washington, DC 20201
TDD: (202) 401-7575
Fax: (202) 260-1012
E-Mail: aoainfo@aoa.gov
Internet Web Site: http://www.aoa.gov