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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Where Does Lifelong Living Programming Occur?
Residential setting is only one option in lifelong living programming. Most people
return to non formalized living settings post injury, typically with a family member
or alone in the community 7. Except for programs serving the catastrophically disabled
(e.g., persistent vegetative state), few formalized programs are capable of providing
for all lifelong living needs. It is also unlikely that such comprehensive programs
would be desirable. Social, vocational, financial and other major life issues, that
affect the daily life of each person, are just as important as habitat 8. Providing
needed services outside of the natural fabric of the social environment, where these
activities usually occur, would be to deny opportunities for normalization and personal
destiny.
Programming must begin within a normalized environmental focus, with supports, added
as needed to help each individual maximize the quality of their life, as any other
member of society. Hence, the community is the obvious place to begin considering
programming functions 9-11. Schools, jobs, recreation centers, counseling programs
and other community services may be the first line of inquiry and involvement for
those with minimal impairment.
Obviously, some people may need levels of support that are beyond local resources.
More specialized programs may then be appropriate. Non-community based programming
is also a viable option, when it best serves the needs of the individual. Thus,
the sheltered workshop which is the bane of one individual, may be the aspiration
of someone else with other interests, resources and challenges. Balances between
personal aspirations and viable options, are realistic challenges that must be faced
on a daily basis in every person's life, whether they or someone else directs their
lifelong living program. When someone besides the individual in question takes this
responsibility, however, there is greater pressure to assure that the best interests
of the dependent person are being addressed.
Finally, programming must be dynamic and respond to the ever changing needs of the
individual and their environment. This includes variables such as ageing, personality,
community development, family changes, financial issues, physical changes, medical
events, etc. The complex inter-relationships of these variables can make it difficult
to predict the future. However, it is possible, and critical to develop a strategy
to address life needs over time.
Beyond Therapy
The rejection of a therapeutic model as the basis for lifelong living programming
does not refute the importance of therapeutic intervention within daily living.
Obviously, persons who continue to experience disabilities are likely to benefit
from appropriate therapeutic intervention. In addition, just like any other member
of the community, new problems or challenges may arise that require the assistance
of others, including professional services. Prospective assistance may also be sought
to develop new skills, enhance self awareness and aid personal growth. Again, a
variety of options may be open to the individual to address these interests, including
therapeutic intervention and formal education. The benefit of educational systems
may lie in their cost, opportunities for mainstream socialization, and self esteem
that they provide. Regardless of the type of intervention utilized, it is preferable
to focus on new skill development rather than the amelioration of existing deficits.
At a minimum, this distinction focuses on future ability instead of past loss. While
some may feel the distinction is splitting hairs, it is never less important. It
helps to focus on the fact that in a lifelong living program, therapeutic services
are used by the individual to enhance their abilities and quality of life. In essence,
services are directed by the consumer towards personally directed goals rather than
directing the goals of the consumer.
Rights and Responsibilities
Someone (most frequently the individual themselves) must assume the implicit responsibilities
for each living person. Although the residual sequela following a traumatic brain
injury may require a different role for the individual post trauma, each person
(or their conservator) still retains the same social responsibilities of all members
or society. Accordingly, each individual has the right of self determination as
well as the responsibility for the choices they make. Each person has the right
to secure or defer services and treatment as well as the obligation to find the
resources to cover accrued expenses. Refusal or unavailability of these services
or treatment may not be sufficient cause for deferral of personal responsibility.
Each person has the right to be viewed for their abilities rather than their deficits.
However, this right comes from the active demonstration of such skills rather than
via the expectation of respect for "potential."
Exercising these rights requires personal responsibility, advocacy and coordination
of effort among individuals. In a society where opportunities are abundant, but
rewards are the product of effort, individual persistence and social competence
are critical in determining quality of life. Hence, returning and remaining in the
community are often two different issues. The resources and ability of the person
with a traumatic brain injury to achieve each of these goals must be individually
considered.
For those who are not capable of self-determination or community tenure, there is
still the question of who is ultimately responsible. Family members have traditionally
assumed responsibility for many dependent persons. However, the life span of the
family unit is generally shorter than that of the dependent person. Parents die,
spouses separate, siblings and children grow apart, resources are inadequate to
meet presenting needs, or personal interests change. Determining what level of responsibility
society maintains for this individual remain unanswered 4, with services being provided
on a take what you can get approach. This frequently results in a substandard level
of living in which the individual is more aptly considered a survivor; a person
who is literally hanging onto the fringes of society, instead of a contributor.
It also makes prospective long term planning difficult.
Turning to public resources does not guarantee cost-effective or qualitative programming.
Each person in our society has a right to access public services regardless of handicap.
However, entitlement and access are often two separate issues. Public funds can
be scarce and subject to political winds. A myriad of regulations designed with
the intent of safeguarding the individual
often work towards the detriment of the person. A number of programs are skeletons
of their original intent. This is frequently caused by program mandates that are
beyond their level of funding, requiring cuts and compromises in services. The issue
is not the goals of such programs, but their ability to carry out their objectives.
Legal and legislative remedies to take time. When such challenges are successful,
they are often at the expense of other programs.
Obviously many public programs do work. Similarly, private, non-profit and proprietary
programs present their own challenges and levels of success. While it can be generally
assumed that one cannot get something for nothing, the provision of money is no
guarantee of quality. Each program or service must be judged on its operational
merits and not on theory or assumptions. Lifelong living programs are complex and
multi-faceted, requiring a blend of resources, priorities and opportunities.
Ultimate solutions to these challenges are not available, which in fact may indicate
how "normalized" lifelong living programming presently is. Few people in life have
crystal balls or guaranteed futures. This does not, however, absolve our responsibility
to seek better answers or neglect those who are dependent or in need. The question
remains how.
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