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[From the Wall Street Journal]
"A Mother Talks to Mrs. Clinton"
by Marianne M. Jennings
[The author is a professor of legal and ethical studies in the College of
Business at Arizona State University and a columnist for the Arizona Republic,
a newspaper.]
My husband and I have the privilege of raising a child with severe mental
and physical impairments. If you were to ask me the most difficult aspect of
rearing this unique little girl, the answer would not be the countless
hospitalizations, the equipment demands, the sleepless nights or the too-long
stares when we're in public. It would be the government bureaucracies we face
to provide for her, protect her, and help her tap her potential.
As I listen to Hillary Rodham Clinton tout the wonders of a national
health care plan, I want to say: "Come follow me, Mrs. Clinton. I can show
you what government does to those it sets out to help."
I would begin by introducing Mrs. Clinton to the five or so caseworkers
assigned to our Claire. One is from Arizona's Department of Development
Disability. Another is with Arizona Long Term Care. Another is with the
Arizona Health Care Cost Containment System. Another is with APIPA, and I
don't know what that stands for. I lost track of acronyms, agencies and
caseworkers long ago.
These caseworkers, assigned as advocates for my daughter's needs, come to
our house, one by one, once each year to conduct two-hour interviews and verify
in person that Claire, a child who is now six and has never spoken, has not
been the recipient of a miracle cure.
I don't know what caseworkers do beyond this interview, but two things
have occurred to me. First, burglars could just arrive at our door with a lot
of forms and an acronym and anyone in the household would let them in. Second,
there must be yet another contrived constitutional privacy right or some
insider trading rule that prohibits state and federal employees who work with
the same family from using one file, comparing notes, sharing information or
even carpooling for interviews. My favorite interview was last fall, when a
caseworker was assigned to re-do hundreds of interviews as part of a new total
quality management program. [That's "TQM", to those fortunate non-initiates --
L.D.]
If I could introduce Mrs. Clinton to our five caseworkers, I would ask her
to pose a hypothetical question to them about Claire's coverage. Mrs. Clinton
would get five to eight different answers. The eight is because some of the
caseworkers who buy into the new TQM program would go beyond the call of duty
and give us two to three wrong possibilities.
I would then take Mrs. Clinton into the world of Title XIX, a federal
benefits program administered by the state for children under 19 who have
permanent disabilities. Theoretically, Title XIX means summer school, swimming
programs, respite care, therapy and a host of services that make it sound like
a luxury spa. Reality is quite another story.
Title XIX qualifies children on the basis of need (ie., income) or degree
of disability. Claire qualified on the basis of disability, but we are still
required once each year to submit to an in-office interview (with yet another
case worker) in which I must give copies of our car titles, house deed, bank
account statements, W2s, and the like. A sample caseworker comment from one
year's interview: "I see you have a new piano in your home. Claire doesn't
play this, does she?" I had to wonder why someone looking at a child who can't
sit, hold her head up or make any discernable voluntary movements felt
compelled to ask such a question.
One year we made the monumental mistake of adding Claire to our car title.
Claire must be on the car title in Arizona for us to have a handicapped
license plate. When we had only a moveable permit that was placed in the front
window, people yelled at us in parking lots. With our official plates, we were
saved from such grocery store skirmishes. But I had to face the glare of a
Title XIXer who said, "Is Claire driving this car?" I was required to sign a
witnessed statement that said our cortically blind kindergartner did not take
the Chevrolet Suburban out for spins.
During our income interview last year, a caseworker spotted our medical
expenses. They are our biggest expense even with insurance, exceeding our
house payments and food costs each month. The caseworker askes, "Why would you
pay medical bills?" I never know about trick questions in bureaucratic
territory, so I responded, "Because we owe them?"
She then explained -- the first government employee in four years to spot
the issue -- that Title XIX covered all of Claire's medical expenses not
covered by insurance. I asked, "How come no one ever told me this?" To which
she responded, "Because they didn't know?"
Once you're in Title XIX, it is Disney's Space Mountain -- dark and
twisted. In 1992 I began asking for summer school approval in April. I
received approval on July 22 -- three days before summer school ended. Last
year I began the summer school approval quest in February. I got it in April,
but someone forgot to put Claire's name on the registration list. I found this
out after a two-hour wait in the registration line. I paid for summer school
myself and have since learned the term "refund" is not part of Title XIX.
I began using our newly discovered Title XIX medical benefits in August,
In just six weeks, I received authorization for a new wheelchair and a
scoliosis jacket. In October I got a call from a caseworker who informed me
that Claire's Title XIX benefits were being terminated as of that day. He had
discovered on the forms that I fill out for the financial interview that a
$1,600 bank account for Claire. It was a burial account within the $1,500
limit allowed by statute, but it had earned interest. Claire had too much
income. I offered to close the account. "Too late," he said. Then he added,
"But you can always come down and reapply for Title XIX." It took me six
months to get qualified the first time. I should have us reinstated just in
time for summer school this year.
I am a lawyer who teaches and writes about administrative process. Yet
this system is beyond my expertise. How do parents with language barriers,
little or no knowledge of due process and noncompulsive personalities cope?
I can show Mrs. Clinton that programs like hers already exist. I can show
her the paperwork, the idiosyncratic rules, the insensitivity, the ill-trained
workers and a bureaucracy as deep as the Mississippi at St. Louis. I can show
her a system, that, much like her proposal, was intended to help. The reality
is that help rarely makes it to our Claire.
[End]