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7. People with Disabilities
Between 20 and 40 million Americans live with
physical disabilities. Figures vary depending on
whether disabilities are classified by health condition,
which means any condition or limitation impairing the
normal functioning of an individual, or by work
disability, which looks at conditions preventing an
individual from taking, finding, or maintaining
employment." (~223) In either case, the number of
individuals directly affected by disabilities and those
indirectly affected, such as family members, is sig-
nificant enough that many testifiers find it meaningful
to discuss a manifold of conditions and issues in
terms of a single, aggregate population.
For people concerned about disabilities, the year
2000 objectives-setting process offers two oppor-
tunities. First, it provides a forum for those most
directly concerned to discuss the implementation of
goals to prevent disabilities in the first place.
Michael Marge of Syracuse university says that "the
1990 Health Objectives for the Nation provided a
blueprint for prevention that focused primarily on
premature death with little attention to premature
disability. (#433) In the Year 2000 Health Objec-
tives, Marge and others hope to see an expanded
focus on the prevention of disabilities.
In total, 50 testifiers commented on prevention of
disabilities, and their specific suggestions covered
many of the priority objective areas, including mater-
nal and infant health, alcohol and drug abuse, infec-
tious diseases, unintentional injuries, violent and
abusive behavior, nutrition, sexually transmitted
diseases and AIDS, environmental health, occupa-
tional health, mental health, and chronic diseases.
The prevention of disabilities is addressed in this
report primarily in the context of specific objective
areas.
Second, the Year 2000 Health Objectives process
provides an opportunity to discuss health promotion
and disease prevention activities, and barriers to the
same, for those currently disabled. Health promotion
and disease prevention mean something different to ~
population already affected by an ~unhealthy" condi-
tion. As a result, several testifiers, including Jeffrey
Brandon of the University of New Orleans, feel it is
necessary to redefine health promotion to include
activities and attitudes that aid an individual and
family in achieving or maintaining optimal functional
64 Healthy People 2000: Citizens Chart the Course
capability and self-dependence, regardless of whether
or not they are "healthy." (~568J Defined this way,
it becomes possible to talk about health promotion
for people with disabilities.
This chapter addresses the special health promotion
and disease prevention needs of people with dis-
abilities and the problems they face in gaining access
to programs to meet those needs. Most of the
testimony addresses prevention of secondary conse-
quences due to disabling conditions, plus general
health promotion and disease prevention activities for
other conditions.
HEALTH PROMOTION FOR PEOPLE WITH
DISABILITIES
A number of witnesses made the case that people
with disabilities can benefit from health promotion as
much as, or more than, others. A health promotion
approach, they argued, can help people with dis-
abilities improve the quality of their lives despite the
physical problems they face. Health promotion, also
is consistent with established rehabilitation practices.
Robert Guthrie of the State University of New
York at Buffalo points out that mental retardation
and developmental disabilities are "life-long, non-
lethal handicaps" for people affected by them. (~529)
Spinal cord injuries, chronic diseases, sensory impair-
ments, and brain injuries can periodically or per-
manently disable individuals, while still allowing them
to live long lives. Because these disabling conditions
cannot be ~cured," argues Margaret West of the
University of Washington, it is necessary to look at
measures of health promotion and disease prevention
that Relate to quality and satisfaction with life, ability
to participate meaningfully in adult roles such as
work, and accessibility, availability, and affordability of
care.n (~333J For example, the provision of occupa-
tional, physical, and speech or language services to
infants in the first two years of life substantially
influences developmental outcomes and can prevent
further deteriorating conditions.
Others underscore the significance of secondary
prevention programs for those with disabilities, not
only to enable the disabled to overcome social and
environmental barriers to full social participation, but
also to provide training and support in maximizing
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their potential for independent living and reducing the
chance of secondary disability. These needs, argues
Brandon, are quite suited to health promotion
activities. In fact, he says, rehabilitation parallels
wellness programming in many respects. Health
promotion, he argues, takes a holistic approach to
health that encompasses more than just physical
wellness. Similarly, rehabilitation provides patients
with physical, emotional, and social support activities.
Since traditional rehabilitation includes an
emphasis on self-responsibility, health promotion
could be incorporated as an additional com-
ponent within this area. Depending upon the
needs of the client, specific health promotion
activities also may be incorporated into his or
her rehabilitation plan. Stress management, for
instance, may be recommended for chronic pain
sufferers, while exercise may be recommended to
increase muscle strength or to help relieve
anxiety or depression.2 (~568)
Health promotion programs in areas such as nutri-
tionai awareness, exercise and fitness, stress manage-
ment, and alcohol and drug abuse prevention, "are of
much, if not even greater, relevance" to the disabled
population, Brandon argues, precisely because of their
mental or physical disabilities. (#568)
ACCESS TO HEALTH SERVICES
Despite their need for health promotion and disease
prevention, people with disabilities face numerous
problems gaining access to health promotion pro-
grams and preventive services. The barriers, the
testifiers point out, are financial, social, physical, and
logistical.
Linda Henry, representing the National Association
for Home Care, points out that advances in medical
technology over the past century have not been
matched by similar advances in health policy. Where-
as technology now allows many ill children to live
into adulthood, there are significant barriers to
enabling these children to live and grow in a family
and community environment. Quoting Val Halaman-
daris of the National Association for Home Care,
Henry writes:
Ten million fragile and disabled children and
their families struggle to find a quality of life
that maximizes their potential, supports indepen-
dence and self-care, and promotes family attach
ment and integrity. Unfortunately, they often
struggle in isolation, remaining in hospitals or
institutions because changes in policy have not
kept up with changes in technology. (#372)
The largest barrier that Henry sees to community
health care for chronically ill children is financial
reimbursement. Others express similar difficulties for
other disabled groups. Examples include (1) insu-
rance policies with riders that exclude coverage of
preexisting conditions and their resulting medical
problems; (2) drugs, wheelchairs, special appliances,
special foods, and formulas that are not covered if
used on an outpatient basis; and (3) services such as
home nursing, social work services, and physical or
occupational therapy that either are not reimbursed
or are covered only on a short-term or intermittent
basis. f#3 72)
Alfred Tallia, Debbie Spitalnik, and Robert Like of
the University of Medicine and Dentistry of New
Jersey say that the
inadequacy of the level of Medicaid reimburse-
ment, or the complete absence of reimbursement
for medical services is extensively cited as a
major, if not the major, disincentive in providing
preventive health care to the chronically disabled
population. The inadequate Medicaid reim-
bursement limits accessibility of services to
clients as few providers can deliver services and
products under this type of system. (#209)
The picture of health care coverage for those with
disabilities is especially grim, notes Ann Zuzich of
Wayne State University. In the United States, one
out of five disabled adults has no health insurance
and is ineligible for Medicaid or Medicare, she says.
Many are denied insurance because they are not poor
enough for public programs or because preexisting
conditions prevent them from using private programs.
When coverage is available, it is difficult to know
what services are covered. Zuzich says that delays in
processing papers for Medicaid recipients often deny
essential equipment for long periods. For children,
these delays can increase the disability. Home care
services are more difficult to obtain than the same
services in an institution. (~727)
In addition to financial barriers to adequate pre-
ventive services, the disabled population also faces
additional difficulties in obtaining quality health care.
Institutional living, argues the Association for
Retarded Citizens of the United States, compounds
People with Disabilities 65
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health problems for the retarded largely due to lack
of qualified medical and support staff trained to apply
appropriate health promotion and disease prevention
approaches for people who have multiple severe
disabilities. (#048) In the community, disabilities
can impede individuals from gaining access to existing
services. People with disabilities have special prob-
lems with inconvenient locations and communication
with providers, according to Tallia and his colleagues.
(#209)
Tallia, Spitalnik, and Like say that to provide
adequate health care to a community's disabled
population, a systematic and comprehensive network
of health care services must be established. They cite
Allen Crocker of Children's Hospital Medical Center
in Boston, who offers the following criteria for
comprehensive sentence to this community:
1. A medical home where an individual's records,
needs, and idiosyncrasies are known by a provider
population that is responsive to his or her needs
2. A primary health care provider who takes
longitudinal responsibility for individual needs, includ-
ing prevention
These elements, they say, "must occur in the
context of a comprehensive network of other health
care elements. Such a community-oriented, primary
care model also should include access to trauma
centers, regional rehabilitation centers, follow-up
programs, clinics that include interdisciplinary profes-
sional coordination, (e.g., nutritionists and physical
therapists), and so on. One trial program built on
this model is now being implemented with help from
the Robert Wood Johnson Foundation at the Univer-
sity of Medicine and Dentistry of New Jersey. In
addition to providing primary care services to a
disabled population, this program is undertaking some
measurement and evaluation activities. According to
Tallia, Spitalnik, and Like, "This project will use
health status program measures and volume measures
to evaluate wellness, morbidity, reliance on polyphar-
mapy, and the need for hospitalizations, as well as
measure cost effectiveness, quality of life, and level of
adoptive functioning in this patient population.
(#209)
66 Healthy People 2000: Citizens Chart the Course
IMPLEMENTATION
In all areas of disabili~mental retardation, congenital
birth defects, developmental disabilities, sensory
impairments, chronic illness, and so on-testifiers en-
courage increased research into the unknown causes
of disabilities and continued focus on the prevention
of disabilities. They also propose better injury and
disability reporting mechanisms, better financial access
to preventive services, and improved physician educa-
tion about serving persons with disabilities so as to
improve the delivery of health care senaces to them.
Finally, they call upon the nondisabled population to
recognize that many disabilities would not be disabling
for individuals in the context of a supportive and
accessible social and economic environment.
According to some testifiers, once there is broad-
based recognition that the problems of disability are
not essentially medical, the necessary community-wide
endorsement of disability prevention activities and
programs for persons with disabilities will be possible.
Allen Crocker points out 15 to 20 states that now
have developmental disabilities prevention plans Of
some maturity" and argues that through such plans
the prevention of developmental disabilities "can be
expedited within the policy resolves of individual
states." Most plans, he observes, start with a "com-
mon public constituency" that works to develop a
statewide conference on prevention and eventually
results in an implementation process involving com-
mitments from a wide range of public and private
groups. Crocker argues that with a state prevention
plan the chances of funding prevention research
projects and understanding the causes of developmen-
tal disabilities will improve. (#326)
I'ving Zola of Brandeis University makes perhaps
the most fundamental recommendation for health
policy directed toward those with disabilities. He
contends that the development of effective health
policies for the disabled requires reexamination of
many basic values by which every member of societr
lives. Instead of building systems of employment,
transportation, and health care that "break the rules
of order for a few," and thus undermine human
interdependence, policies must begin to look at
designing a Tremble world for the many, where
interdependence and independence are not in conflict.
(#798)
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REFERENCES
1. National Council on the Handicapped: Toward Independence: An Assessment of Federal Laws and Programs
Affecting Persons with Disabilities. Washington, D.C.: U.S. Government Printing Office, February 1986
2. Brandon JE: Health promotion and wellness in rehabilitation sentences. J Rehab 51~4~:54-58, 1985
TESTIFIERS CITED IN CHAPTER 7
048 Davis, Sharon; Association for Retarded Citizens of the United States
209 Tallia, Alfred, Spitalnik, Debbie, and Like, Robert; University of Medicine and Dentistry of New
Jersey
223 Waldrep, Kent; Kent Waldrep National Paralysis Foundation (Dallas)
326 Crocker, Allen; Children's Hospital (Boston)
333 West, Margaret; University of Washington
372 Henry, Linda; Children's Hospital (Denver)
433 Marge, Michael; Syracuse University
529 Guthrie, Robert; State University of New York at Buffalo
568 Brandon, Jeffrey; University of New Orleans
727 Zuzich, Ann; Wayne State University
798 Zola, Irving; Brandeis University
People with Disabilities 67
Representative terms from entire chapter:
disease prevention
