While I believe getting the message out there about the lack of
services for our children is a good thing, I think this article went a little
overboard portraying parents as beating up on poor defenseless school
systems. Patty
January 30, 2004
As Autism Cases Rise, Parents Run Frenzied Race to Get Help
By JANE GROSS
RDSLEY, N.Y., Jan. 29 - When Phyllis Lombardi lets her 6-year-old son,
Joey, play in her yard here, she cannot take her eyes off him because
he is autistic, barely speaks and might bolt into traffic.
But a fence costs more than the Lombardis can afford since they moved
to this Westchester County village last year. Ardsley has
state-of-the-art autism programs, but also real estate prices that have forced the
family into a rental just a block from the Saw Mill River Parkway.
It was desperation that brought the family here from Rockland County,
when Mrs. Lombardi joined an army of parents, their frustration growing
as their numbers increased, facing a crisis of supply and demand when
their autistic children reach school age.
"I can't fix him, so my only peace of mind is to get him the best
services I can," Mrs. Lombardi said, echoing mothers from Palo Alto, Calif.,
to Princeton, N.J. "That's what I have to do to sleep at night."
The mismatch between needs and services is widening, experts say,
despite many start-up programs for autistic children. But new schools and
additional classrooms have not kept pace with skyrocketing caseloads and
growing sophistication among parents about what sort of educational
techniques work.
Education - highly structured, virtually one-on-one and thus
astronomically expensive - is the one proven treatment for autism, experts say.
But it is no guarantee. Examples of exceptional success - and a narrow
window of opportunity - have frantic parents trolling the Internet,
visiting any school that sounds promising, winding up on waiting lists and
often moving or suing their school district to get what they want.
Dr. Catherine Lord, primary author of a 2001 federal report on teaching
techniques for autism, estimated at the time that only 10 percent of
affected children had access to the proven labor-intensive pedagogy,
which can cost a school district as much as $60,000 a year per child. Dr.
Lord says there are many indications that the situation is worse today,
when schools nationwide are dealing with 120,000 autistic students, up
from 20,000 a decade ago.
Some private schools that accommodate a mere 25 children have waiting
lists with hundreds of names on them. The best public school programs
are besieged. There are not enough certified behavioral therapists, so
promising aides are trained in the classroom and then fought over, like
prized nannies, by parents seeking after-school and weekend help. Dr.
Fred R. Volkmar, an autism researcher and diagnostician at Yale
University who has a three-year waiting list to see new patients, said even the
wealthy are not protected. "I see mega-mega millionaires and movie star
folks who can't find anything to tap into," he said.
A few states - notably North Carolina and Delaware - provide
coordinated, seamless services from preschool until the age of 21. But more
common is an incomprehensible jumble that parents must decode amid the fog
of learning their child's grim prognosis. New York State has exemplary
services for preschoolers, paid for by county departments of health, and
a dearth of services for students in kindergarten through age 21, whose
education is paid for by local school districts. New Jersey is just the
reverse. Connecticut, alone in the metropolitan region, offers no
Medicaid benefits for the disability. "It's an appalling jumble," Dr. Lord
said.
It took three years for Mrs. Lombardi to find Concord Road Elementary
School here. She called hundreds of strangers seeking advice. She sent
bouquets to school secretaries who parted with nuggets of information
about teaching methods and staffing ratios. She sneaked into
back-to-school nights to see if the special education students were hidden in the
basement.
Eventually, Mrs. Lombardi decided that Ardsley had the best programs
around, so good that districts from New York City to Rye Neck pay tens of
thousands of dollars a year to place severely autistic children here.
Joey would have his own aide to help him sit still, a classroom
partitioned into quiet learning spaces with 10 adults supervising 11 children,
private speech therapy four times a week and exposure to ordinary
kindergartners at lunch and recess.
But to make it work, Joey's father, Nicholas, is working 15-hour days
as a ticket broker and Mrs. Lombardi has had to take a part-time job as
a receptionist. In addition to the costs of living here, there is
Joey's out-of-school therapy, which sustains his fragile progress and can
cost a family $20,000 to $40,000 a year.
Some school systems are scurrying to catch up with Ardsley. But parents
resist being part of a pilot program. Dr. Lord understands their
reluctance, yet she believes that these start-ups, serving two or three
autistic children at first, are essential to an eventual expansion of
services.
Mrs. Lombardi was impressed by the charismatic teacher in the one
autism classroom in Pearl River's elementary school, in Rockland County,
where the family had its home and where Joey had attended an excellent
preschool program. But the situation was "too fragile for my liking," Mrs.
Lombardi said. "What if the teacher broke her leg, or took a maternity
leave?"
In Westchester, tiny programs were starting in Ossining, which would
have been more affordable, and Briarcliff, where her sister-in-law lives.
"But once I heard `new' that was it," Mrs. Lombardi said. "I can't
waste time for my kid while they're learning."
Moving to a district with a long-standing program is a popular strategy
for families like the Lombardis, creating what seem like autism
clusters in places like Ardsley; Guilford, Conn.; and Naperville, Ill.
Placement in a district where a family does not live, or in a private school,
requires the home district to agree that its educational programs are
not "appropriate" as mandated by federal law. In that case, a district
must pay for the disabled child's education elsewhere.
If the home district insists that it has adequate programs, well-to-do
families often threaten to sue. Generally they get what they want,
without going to court, because the district cannot afford legal fees or
lost working hours for professionals who would have to testify.
New York City has few private schools for autistic children once they
are 5 years old, and several efforts to start them have foundered
because of real estate costs. The public school system serves 3,000 autistic
students, adding additional classrooms as the need arises. Some of its
programs are highly regarded by special education experts statewide and
prompt families to move from one borough to another. But some
upper-middle-class New Yorkers, especially those whose nondisabled children are
in private school, fear that the programs are not good enough.
Ilene Lainer, for instance, never looked at a public school for her
autistic son Ari, now 7. Instead, she set up a home program for him, which
was supposed to be supervised by an agency under contract to the city.
Nobody ever came to observe the parade of therapists working with Ari,
Ms. Lainer said, so she hired a home supervisor from the private Alpine
School in Paramus, N.J. When the city refused to pay Alpine's fee, Ms.
Lainer threatened a lawsuit and prevailed at a hearing before an
administrative law judge.
Meanwhile, she searched for a private school in New Jersey. One asked
for a video of her son for diagnostic purposes and never acknowledged
its delivery. Another never called her back about an interview, despite
weekly phone messages. "You have no idea how cruel these people can be,"
said Ms. Lainer, who practiced law until her son's diagnosis.
Ari was eventually accepted at a New Jersey private school. Ms. Lainer,
despite one legal victory, doubted that New York City would pay for her
son's education in another state and so she began house hunting across
the river in districts she was told were most likely to agree to pay
for private school.
But, she simultaneously retained a lawyer for a second hearing with the
city. To Ms. Lainer's surprise, the city settled and reimbursed the
$58,000 in annual tuition she had already paid. For now, she is driving
Ari to Bergen County every day and is a founding member of an advocacy
organization exploring ways to open comparable schools in Manhattan.
In the suburbs, parents also hire lawyers to get extra services or an
out-of-district placement. Here, too, special education committees
generally give in. Some of the guest students in Ardsley came with the full
support of their home districts and others because the parents
threatened a legal battle.
Mrs. Lombardi is not inclined to fight. And she wonders what happens to
parents who do, and then must face their antagonists for the annual
review and revision of a child's Individual Educational Plan, which is
essentially a contract for services. In Joey's case, this means deciding
each year if his one-on-one aide is still necessary or if four sessions
of private speech therapy a week can replace five.
Mrs. Lombardi wishes Concord Road had speech therapists trained in a
particular method that has helped Joey elsewhere. She has written letters
to the Board of Education and put it on the agenda of the special
education committee of the P.T.A. But she accepts that the training is too
expensive. "Every parent thinks more is better," Mrs. Lombardi said.
Mrs. Lombardi's persuasion depends on food, not fisticuffs. She puts
boxes of candy in Joey's backpack with a note to his teacher saying
"Happy Monday." She bakes corn muffins for the bus driver, who encourages
the boy to imitate his chirpy "Good morning!"
When things are particularly difficult, like when Joey had problems
with toilet-training or tried a weighted vest to calm his frequent
thrashing, Mrs. Lombardi turns to chocolate. "I go with my brownies," she
said. "And if they see frosting, it's `Oh, Mrs. Lombardi, what can we do
for you?' "
Copyright 2004 The New York Times Company