After her
traumatically brain-injured
(TBI) son, Jim, had finally
settled down and gone to sleep,
Adelaide Newton sat alone in her
living room to ponder her
current situation.
While her two older children
were married, had children and
were living independent lives of
their own, Adelaide, a widow in
her early 60s, had to decide how
to deal with Jim, 19, once a
very promising college student.
A skiing accident had left him
with permanent mental
limitations. She had barely
recovered from the loss of her
husband from a sudden heart
attack when the call had come
that Jim was being airlifted to
the regional trauma center.
Now, many months later, she had
to decide on a long-range plan.
Although Jim had done well in
rehabilitation and his
left-sided spastic muscle
weakness improved, his thinking
and behavior were still severely
impaired. There seemed to be no
probability that he would ever
be able to live on his own. The
social worker had made it very
clear:
"You will have to decide,
Mrs. Newton, whether to keep Jim
at home with you or start
looking for a long-term
placement."
At the time, Adelaide had smiled
and nodded. Now, she resented
the fact that she had to cope
with this alone. She had
searched for another solution
but now knew that the social
worker was correct, she would
have to develop a plan.
During this trying time she had
become very familiar with the
singular burden borne by the
parents of a severely
handicapped child
─
not just those with TBI, like
Jim, but children with
congenital anomalies and
disabling conditions of all
sorts. Some were less severe
than others but they all were
life-changing responsibilities
for parents who had never
expected to be confronted by
such a challenge. Adelaide
learned about SSDI, Medicare,
Medicaid, groups homes, special
schools, sheltered workshops,
support groups, respite care and
devoting the remainder of one's
life to the caregiver role. She
had not, however, been able to
decide which route to take.
It suddenly occurred to her that
a college classmate had faced a
similar fate with a young
daughter due to an automobile
accident. On an impulse, she
looked up the number in the
alumni directory and called.
After a few reminiscences,
Adelaide revealed the true
purpose of her call. Her friend
was empathetic but curt. She had
obviously
"been through the wringer"
with her own problem and family.
"Adelaide," she said, "quit
dithering. Get out and get as
much advice from knowledgeable
sources as you can find. Then
sit down, list your options and,
with appropriate help, assign a
cost figure to each. Once you
feel ready, make your choice.
There is no other way."
Big Challenges, Big
Rewards
Families with special needs
children are remarkable in many
ways. Their profound
responsibilities force them to
be financially astute decision
makers with both short-term
practicality and a long-term
vision in mind. They are
constantly challenged by the
need to juggle shifting
priorities out of their control
as dictated by the needs of
their child. And most
significantly, there is no end
to their job.
The caregiving family has the
attributes of the ideal client
for your practice. Your
responsibility is to share that
focus. Connected as they are to
other families similarly
challenged, the network created
by their common issues both
bonds and protects the families.
You can be either a valued
provider or dropped like a hot
potato, depending on your level
of service
─ and empathy.
Building the
Relationship
Assuming you meet the family
after the care situation has
developed, there are three
primary phases of your
relationship
─ nd your level of
responsibility:
Acute Phase
Early on you must assess all
known and potential risks to
both the child and the
caregiver. Action items:
-
Life insurance on the caregiver sufficient to guarantee special needs are met
-
Disability insurance on the caregiver
-
Advance directives for care of the child, including naming both medical guardian and financial trustee (not the same person)
-
Establish a trust to own the existing assets, if substantial and/or to own the life policy
Care Phase
-
Health saving accounts and medical savings accounts as available
-
529 plans for educational opportunities
Long-Term Care Phase
-
Life insurance for the child, subject to condition and availability
-
Longer-term savings via trust in the event of the caregivers demise
-
Long-term care for the caregiver
-
Locate continuous-care retirement facility (pre-funded)
The increased longevity of both
special needs children and their
parents force a level of
planning unknown to past
generations. Your assistance is
invaluable and will become known
across a network of families.
Beyond your income, service to
these remarkable families will
compensate your soul.
