CODI: Cornucopia of Disability Information

Why a Resource List?

			 Why a Resource List?

       "Eighty percent of healthcare today is self care, the
       actions people take to bring themselves relief or prevent
       the condition in the first place."
			Molly Metter
			National Program Director of Healthwise

      In the past getting older was a not an issues for people with
disabilities. In the past we didn't age, we just died!  We are the first
generation to live this long, so the question is not will we live, but how
well will we live?  So now, people with disabilities are asking questions
about the quality of our living and the quality of our aging. This Resource
List is a growing document to help you locate information and resources on
wellness, self- care, health care, exercise, advocacy and aging with
disability.

      There are many people who live with disability long-term, and long-term
can be five to thirty or more years post onset, who are experiencing changes
in function and experiencing new or more significant secondary disabilities as
they age. Secondary conditions are those that occur because of the pressures
of the primary disability and may include, for example, pain, fatigue, changes
in skills or physical condition, fractures, pressure sores, etc. (List # 51,
Page i). Some of these changes may be part of the typical aging process but
these changes may occur at earlier ages for people with disabilities than for
people without disabilities. People who have lived with disability long-term
are experiencing signs of aging that combine elements of aging with conditions
unique to living with disability.

      The process of aging not only relates to chronological age but also to
duration of time spent living with disability. Depending on one's lifestyle,
genetic heritage and type of disability, living long-term with a disability
produces wear and tear on muscles, skeletal and other body systems.  People
are reporting unexpected changes in their energy and activity levels as they
age.  Roberta Trieschmann in Aging With Disability, (List # 49) states that
most people with major physical disabilities of at least thirty years duration
note some tenderness and soreness in joints, muscles and tendons which have
been carrying the extra load of impaired physical function from other parts of
the body. Heavy use or overuse of certain body parts to compensate for lost
motor ability in other body parts can lead to problems over time. As people
with disabilities age, the physical penalty increases. Many people with
disabilities considered their disabilities to be static. A new or increased
level of disability or a new or more significant secondary condition(s) was
not anticipated.

      These issues and new realities for people with disabilities are
significant and further influenced by newly revised life expectancy statistics
which state the 

		    "longer you live the longer you live!"

This means we are living much longer and statistics show the older you get,
the longer you're going to live.  A male born today has a life expectancy of
72-73 and a female, about 78 years.  But if you reach age 65, you're life
expectancy goes up an added 18 years for females and 12 years for males.

      So what this mean for people with disabilities is that most of us will
live longer than we think. And as John Fries says in Aging Well, A Guide for
Successful Seniors, we have much to think about regarding what we can
influence or change in terms of the quality of our aging years. It will pay
dividends to keep ourselves in the best health possible.  But the question
remains how do we do this?

      Baby boomers, with and without disability, are growing older and
becoming more vocal in expressing concerns about aging. At the same time
providers are becoming more aware than ever of what they don't know related to
what constitutes the "typical course of aging" (List # 28, page 5). And, even
less is known about the phenomenon of aging with an existing disability. There
is little knowledge about the aging process and its interaction with
age-related conditions and pre- existing functional limitations associate with
disability.  There is little, if any, substantive or empirically-based
information about how people with disabilities maintain or lose function as
they get older and to what degree they experience atypical aging (List # 51,
Page i-ii).

      What do people with disabilities do while researchers define exactly
what these issues are, engage in pain staking slow, detailed longitudinal
studies, confirming or unconfirming the voluminous clinical and anecdotal
information that already exists related to aging with disability?  What do we
do while we wait for the dissemination gap to be filled?  The awesome number
of years that often elapse from time the: issue surfaces (anecdotal and
clinical information), funds are allocated and the issue becomes a research
priority, the literature is reviewed, proposals are written, proposals are
reviewed, grants are awarded, research starts, research is completed, results
get published, results get disseminated, and finally results get utilized. The
question is, in whose lifetime does this occur?  For people with disabilities,
the clock is ticking, life is short, and there is an urgent need for
information now!

      We want to be able to anticipate the type, severity and course of
age-associated changes that are likely to occur as we reach middle age and
older age. We want to know: what to expect; what preventative steps can be
taken to prevent or slow effects of aging with disability; how to translate
living longer into living better and actively; how to prevent losing
independence; and what to do to delay new conditions and increasing
disability.  In other words how do we: mitigate risk factors (including
effective use of assistive technology); access resources that will offer
knowledgeable and periodic review, assessment and intervention; and find
options and choices regarding fitness, physical, social, and financial
options.

      This Resource List is a beginning attempt to identify available
information.  Most entries do not represent rigorous research information as
such information does not yet exist. Entries cover suggested preventative
health measures to reduce future complications and secondary conditions; what
changes some people with disabilities may expect; what health- care options
and choices are available and the impact of current health management
techniques; options for clinical and self-care practices and strategies that
may be used to prevent secondary conditions, complications, and age-related
conditions.  The entries include resources as well as anecdotal information
and clinical observations to help people with disabilities look at options in
terms of what we can influence or change regarding the quality of our lives
and the quality of our aging.