What is Lifelong Living and How does it Relate to Quality of Life?
Harvey E. Jacobs, Ph.D., Michael Blatnick, B.S., and Jean Sandhorst
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Abstract
Lifelong living addresses the challenges that persons who have experienced a traumatic
brain injury face after formal rehabilitation ends and it is time to adjust to long-term
daily living. Each lifelong living program is personal and unique, according to
the abilities and resources of the specific individual. Consumer control of programs,
within individual abilities, helps to assure personal responsibility and self-determination.
Residential placement is not synonymous with lifelong living. Many of the supports
required in lifelong living can be developed from existing community services with
specialized programs used as necessary. Because of the long term nature of most
programs, funding can be a formidable challenge and a number of approaches are being
investigated to moderate direct costs. The ultimate success of lifelong living programming
is measured by the lack of institutionalization that it "suffers" over time and
how such programming helps the individual improve the control and quality of their
life.
The end of formal rehabilitation services may be a convenient point to consider
the start of lifelong living programming for a person who has experienced a traumatic
head injury. The formal concept of lifelong living itself, is relatively new to
this field. It represents another point on the continuum of resources for some people
who have experienced a traumatic head injury 1,2. By virtue of our ability
to begin to recognize this issue, it may be considered as an advance in our field
as we learn more about both the power and limitations of our technology.
On the other hand, any assumption that living begins after formal rehabilitation
ends is a poignant reminder of many miles left in the maturation of our service
delivery system. It is an elementary fact that a traumatic head injury often changes
the life of the individual and those around them 3. However, life is
not placed on "hold" immediately following the injury or during formal rehabilitation.
Still, it is ironic how often we make this type of demand during the "rehabilitation
process" on the person who experienced the brain injury and their support network.
Thus, in our attempts to assist in the improvement of the quality, self-direction
and dignity of life for a person who has experienced a traumatic brain injury, through
lifelong living programming, we must be careful to avoid its institutionalization.
What is Lifelong Living?
Lifelong living addresses the challenges that persons who have experienced a traumatic
brain injury face after formal rehabilitation has ended, a stable discharge environment
has been established and it is "time to get on with living." It is a time when a
person is again recognized for their overall make-up and character, rather than
for one catastrophic event; when the "brain injured patient" is replaced by the
"person who experienced a brain injury." While we may continue to acknowledge the
significant residuals that may remain after the accident, we also begin to recognize
the individual as a "whole," albeit different person again. A brain injury changes
a life, but over the long term it must not define the life.
For some people, lifelong living means returning to full or close approximations
of life as it existed before to their brain injury. For some, it means near total
dependency on others for daily needs. For a large majority of those who experience
traumatic brain injuries, it means something in between; of being capable of meeting
some personal needs, but needing various levels of assistance in other areas.
For all persons who have experienced a traumatic head injury and their support systems,
lifelong living programming signifies a shift in principal effort and attention
from attempts at aggressive restoration of lost ability to adjustment to the challenges
faced in daily life, as much as possible, within one's abilities. This shift does
not withdraw the hope and effort directed towards continued gains, but places a
different emphasis on how resources are managed. More effort is directed towards
maximizing the benefits of one's presenting lifestyle than towards attempts at aggressive
development of abilities to promote a different lifestyle. This is not to deny the
potential for continued recovery, but to recognize existing potential when the rate
of recovery slows.
The need for lifelong living assistance must not denigrate the person involved.
By definition, no one in a society is totally independent, we all require assistance
from others and have our own individual lifelong living programs. Depending how
we individually approach life, our personal lifelong living programs may be a spurious
combination of daily interests and obligations or a systematic plan that carefully
accounts for family, work, interests and other factors. Most importantly, each person
is assumed in control of their plan and responsible for their destiny in terms of
making conscious choices, accepting consequences for decisions and finding the resources
required for daily living.
Unfortunately, it is too easy to assume any number of treatment models when addressing
long term issues among persons with disabilities. These models may be highly effective
during the initial stages of intervention, when the individual and their family
are highly dependent upon others for almost every need and lack the knowledge or
skills required to address presenting issues. However, the "price" for this assistance
on a continuous basis can be high. It often includes temporary loss of self, lack
of participation in the decision making that affects personal destiny, and being
viewed for one's deficits rather than abilities. Over the long term, this is detrimental
to personal destiny.
In society, few people survive on their weaknesses. It is what one can contribute
to others that is important. The assistance that one may need from other people
is balanced by what they can give to others, or how they, by their own choice, use
that assistance. Apportioning this responsibility to someone else increases the
chances of a lower quality of life for the person in question.
Obviously, a significant number of persons who have experienced a traumatic head
injury require some level of support in managing daily and long term personal affairs.
The challenge is in finding a mixture that leaves the individual in the greatest
level of personal control that they can responsibly administer. Providing too much
assistance can foster dependency, resentment and can be counter productive to personal
determination and sufficiency. On the other hand, too little assistance may set
the individual up for failure and regression from previously acquired gains.
Beyond Empowerment
Lifelong living models must celebrate each individual for their abilities and contributions,
not their deficits. In an effective model, each person is responsible for their
choices and destiny. This ideal is tempered by the realities that not all people
can independently manage their own lifelong programs; an obvious qualification for
many of those seeking assistance. There is frequent concern for dependent persons
who have experienced a traumatic head injury, relative to each person's cognitive
and behavioral disabilities. Each person's unique challenges present questions about
what type or how much support is appropriate to the situation and where this assistance
will come from 4.
The use of advocates, ranging from family members, to professional case managers,
to court appointed conservators presents one way to address this responsibility
5. Although this may be effective for persons with severe impairments,
friction frequently occurs in cases of less severe impairment, or when services
are simply not available. These types of supports, when improperly applied also
bring about the classic charges of overprotection by the advocate on the one hand
and concern about lack of insight by the person who has experienced a traumatic
head injury on the other hand. In addition, the demands involved in assuming responsibility
for the life of another individual frequently becomes overwhelming for any advocate,
affecting the quality or duration of their involvement 6.
Empowerment training has received increasing attention as a promising alternative
in promoting lifelong needs. Persons participating in such training learn how to
take greater control of their lives along with the responsibilities for such actions.
The orientation of this approach is appealing by virtue of the greater control it
should give one over their destiny. The effectiveness of this approach has not yet
been fully evaluated. It is likely to offer promise for many persons with mild to
moderate impairments, but must be evaluated on a case by case basis.
Although empowerment may be viewed as a positive step over advocate oriented systems,
it still relies on one group of people giving "permission" to other people seeking
to re-gain control of their lives and destinies. In daily living, responsibility
for one's life is an implicit assumption. For most people, assistance and restrictions
in decisions of daily living and destiny are added, rather than the converse of
challenging the individual to demonstrate independence from an assumption of full
dependence.
To some this may be a subtle distinction; but it is important for a number of reasons.
First, it focuses on abilities rather than disabilities and the assumption of capacity
over incapacity. Second, it places the individual in control of their life and destiny,
within their capacities, and makes this a key cornerstone of any programming, rather
than an afterthought. Third, it clearly places the individual in the role of the
consumer and programming in the role of a service that the consumer may select.
Thus the individual directs the program, rather, as happens in so many situations,
the program directs the client. Fourth, there is constitutional precedent for this
distinction. In our society, one is innocent until proven guilty, is assumed to
be in control of one's faculties until proven otherwise, etc. In other words, we
assume the strength and power of the individual until demonstrated otherwise and
then it is only through extensive procedures and documentation that self determination
may be challenged.
Although the individual may choose to or need to resign these basic rights of self
determination during early phases of treatment following a catastrophic injury,
this is often a temporary condition. It must be rescinded as quickly as possible,
if the person is to reassume the power over their life that they are capable of,
responsible for and entitled to once this brief period of treatment has ended. For
many people a broad range of supports from informal assistance to full conservatorship
may still be needed according to the level of disability that a person demonstrates
following a traumatic head injury. However, these supports must be added through
demonstration of need, rather than "heaped on" through assumption of deficit.
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