Ruined by Health Care:
My Family Learned that Even with Insurance
We Weren't Safe from Financial Ruin
By Kate Michelman, The Nation
Posted on April 10, 2009, Printed on May 8, 2009
http://www.alternet.org/story/135939/
It was a crisp and brilliant autumn day last October when the medical and
financial crises
with which my family had successfully, if barely, coped for seven years
became a
catastrophe.
My husband had been diagnosed with Parkinson's disease in 2002, a year
after our
daughter was paralyzed in a horse-riding accident. His balance had
deteriorated until he
fell two or three times at home last summer. In the face of his diminishing
physical
condition, a single fall could result in disastrous injury. We scheduled
an appointment with
his neurologist in Washington.
We pulled up to the main entrance of the hospital after the two-hour drive
from our home
near Gettysburg, Pennsylvania. My husband opened his door, grabbed the
roof of the car
and began to pull himself out as I walked around to help him. I was too
late. In an instant
-- time slowed enough for me to see the danger but raced ahead too fast
for me to reach
him -- he lost his grip and fell to the concrete, shattering his hip, breaking
his femur and
causing internal bleeding that kept him in the hospital for months.
My husband is a retired college professor, and what the teaching profession
lacks in salary
it often makes up for with generous benefits. His health insurance would
cover most of the
emergency costs related to the fall -- the surgeries, the hospitalization,
the drugs. But in the
astronomical sums the cost of medical care often entails, "most" is not
a reassuring word.
Months later, as his discharge from the hospital drew near, I sat in my
living room looking
at the bills piling up on the table. The co-pays, uncovered care and
other costs had already
reached $8,000, and we had virtually nothing left.
Seven years of caring for my husband and our daughter, who had no insurance
at the time
of her accident, had all but exhausted our savings. As my husband's condition
deteriorated,
I was caught in a trap. We needed my income, but the kind of political
consulting work
that was my forte was incompatible with the demands of caring for him.
It was simply not
possible for me to be available for him 24/7 and simultaneously to work
overtime, traveling
for days or weeks on the campaign trail, to bring in the income that would
keep us afloat.
The fraying financial thread by which we were already hanging was now certain
to snap.
When I heard the awful sound of my husband's body hitting the concrete
outside the
hospital, I knew the modicum of independence to which he had clung for
so long was
gone. He was discharged into an assisted-living facility, where most of
the cost was
excluded from both his private long-term-care insurance and Medicare. At
$9,000 a
month, the bills accumulated quickly.
Recently, we decided to bring him home, although the doctors would have
preferred that
he stay at a facility with full-time supervision. But this was a mathematical
decision, not a
medical one: we do not have the money it costs to keep him there. I had
already stopped
working, to care for him; our savings are nearly depleted; and his pension
is not nearly
large enough to pay the bills.
Today he needs nearly round-the-clock professional help at home -- less
than the cost of
the assisted-living facility but still far more than we have. I have spent
recent weeks looking
for a job that can add at least enough to my husband's pension and our
Social Security
benefits to cover the cost of his care. It is a dilemma familiar to so
many women -- finding
work that can pay for care but also leave time for providing it.
The time is drawing near when, job or no job, the expenses will simply
be more than we
have. I am coming full circle, back to where so many women's lives begin
and end -- and
where my career as an activist began: jobless, unsure how to pay the next
month's bills,
caring for a family that depends on me for survival -- and utterly and
deeply determined
that something about our country must fundamentally change.
That was in 1969. My first husband had abruptly left my three young girls
and me,
stranding us without financial support. Our family was in crisis, and when
I found out a few
weeks later that I was pregnant too, I knew it was impossible to give a
new baby --
whose father had already deserted it -- what it deserved while also giving
my daughters
what they needed. So in 1969 I made the difficult decision to have an abortion.
Because
state law radically restricted access to the procedure, that decision had
humiliating
consequences. I was forced to obtain permission both from the man who had
abandoned
my daughters and me and from an all-male hospital review board. The board's
interrogation in a hospital conference room covered subjects like whether
I was capable of
dressing my children in the mornings and whether I had been satisfying
my husband
sexually.
That experience sparked a lifetime of activism that eventually took me
to the front ranks of
the prochoice movement, where I forged deep and lasting friendships with
some of the
most powerful political figures of the past thirty years.
Not many Republicans were among them. But there ought to have been more
-- because
in a distant era fast receding in time, theirs was the party of moderation
and individual
rights, and also because, ironically enough, I have led precisely the life
Republicans claim
to value. I started as a single welfare mother, then worked my way through
college en
route to a successful career. My second husband and I have sustained a
traditional and
loving marriage for thirty-five years. He purchased quality health insurance,
including
long-term-care insurance, so he would not be a financial burden to others.
He enjoyed a
long and steady career at an institution that would pay healthcare costs
and a modest
pension for life. Between his salary and mine, we achieved a reasonable
degree of
economic comfort -- never wealthy but independent, self-sufficient, responsible.
Then came our daughter's accident.
We got the call in 2001. She was pursuing her lifelong love of horses as
a trainer in upstate
New York. One day in May her horse got spooked, reared up and fell over
backward on
top of her, crushing three of her vertebrae and paralyzing her for life.
The weeks and months that followed included multiple surgeries, a long
hospitalization and
extensive rehab. The bills were exorbitant, to say nothing of the fact
that our daughter
probably would never again be able to support herself through full-time
work.
When the bills came in, it never occurred to me that walking away from
them was an
option. I cashed in the IRA on which we were depending for retirement and
paid them
myself.
My husband's diagnosis followed just as our daughter was beginning to stabilize.
Eventually I had to leave work to care for him, and our financial independence
deteriorated on a parallel track with his health. The story is familiar:
the medical crisis that
becomes a financial one. Still, we were able to hold things together, moving
from one crisis
to the next but finding a way to get by.
That ended in October. We quickly learned that not even the most frugal
planning is
enough to cope with surging healthcare costs. The long-term-care insurance
barely covers
a fraction of his long-term care. I will care for him at home, but a time
will come when
even our home might be at risk: if he needs nursing home care, Medicaid
will pay for it
only after we have liquidated most of our assets. Consequently, a blessing
-- my husband
could live like this for years to come -- is also likely to bankrupt us.
I do not tell this story because it is unique. On the contrary, the point
is precisely that
countless people across the country are living it. And millions more are
a crisis away from
joining them -- one lost job, a diagnosis, an accident. Most people do
not have the luxury
of being able to call, as I do, on powerful friends for help. Not even
these friends, of
course, can change the predicament my husband and I face. Nor will the
situation change
for anyone until political leaders get serious about comprehensive healthcare
reform.
By "comprehensive," I mean that piecemeal approaches will not work -- not
economically,
not morally. The healthcare crisis is not a series of isolated problems.
The problem is not
just the uninsured. It is not only the underinsured. It is not the young
or the old. My
husband had excellent health coverage; our daughter had none. He faces
chronic illness in
the twilight of life; she suffered a terrible injury just as her adult
life was beginning. Between
them, they span the complete spectrum of healthcare economics in America,
but when
crisis struck, they found themselves in the same place.
Our story also illustrates the unique challenges women face in the healthcare
system, as in
the economy at large. Women are paid less and given benefits less frequently
-- yet they
are the ones on whom the responsibility of caretaking disproportionately
falls. In addition,
women disproportionately, but hardly exclusively, understand the perverse
economic
choices the healthcare system imposes. In my case, I had to quit working
to care for my
husband, only to arrive at a point at which he needs care I can afford
only if I can find a
job. The bills, meanwhile, are often inexplicable, sometimes contain mistakes
and are
always impossible to resolve without encountering a thicket of red tape.
Even on the other side of that thicket, the insurance companies cannot
answer the most
vexing question my husband and I -- and so many others -- ask: if "health
insurance" does
not pay for healthcare when people need it, then what exactly do those
words mean? And
all this says nothing about the fact that my husband had the foresight
to purchase
long-term-care coverage. The problem is that it nominally covers long-term
care but does
not cover its actual cost.
I am often told there is a shocking quality to our story -- it prompts
a realization that if this
could happen to someone like me, it could happen to anyone. But of course
there is little
that ought to surprise us; political connections are bound to be of little
avail in the face of a
problem politics has refused to address.
If there is an upside to the country's healthcare crisis, it is that the
problem is hurtling
toward a point at which it absolutely cannot be ignored without immediate
and disastrous
consequences. If there is an upside for me, it is this: returning to those
difficult days of
poverty and fear in 1969 also means returning to a place where anger inspires
activism. I
was a young woman then, of course, with a lifetime of battles ahead. I
am not so young
now. But I have enough years left to have one more fight in me. Healthcare
is it.
Kate Michelman was president of NARAL Pro-Choice America from 1985 to 2004.
She is the author of With Liberty and Justice for All: A Life Spent
Protecting the
Right to Choose (Penguin/Hudson Street Press, 2005).
© 2009 The Nation All rights reserved.
View this story online at: http://www.alternet.org/story/135939/
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