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The New York Times

Battling Insurers Over Autism Treatment

By MILT FREUDENHEIM

December 14, 2004

It took Beverly Chase 14 months of fighting with her health plan, Cigna

Behavioral Health, to get payment for autism treatments for her 4-year-old son,

Jake. This, despite considerable leverage on her side: a state law in Indiana,

where she lives, requires insurers to pay for the behavioral therapies that

parents say can produce

striking improvement in autistic children.

Cigna did not respond to her request for months, and later argued that her

son's therapist was not properly accredited. Even after the plan agreed to

contribute to the costs, Mrs. Chase, who lives in Avon, Ind., said she still

had to make $500 a month in co-payments.

" In Indiana the law is on your side, " Mrs. Chase said, " if you have the

tenacity, the mental health and the stability " to insist on the benefits,

adding,

" It is not an easy road. "

With an estimated 425,000 autistic children in the United States, parents

are increasingly demanding that insurers pay the bills for treatment. But

most insurers say that such treatment has not been proved effective by

scientific tests and that therapists often do not have sound credentials.

Even in the 17 states where autism coverage is required by law, insurers

often drag their feet on payment or avoid it in individual cases by questioning

the qualifications of the therapist or even a doctor's affirmation that

treatment is medically necessary.

Autism is a poorly understood brain disorder that impairs the ability to

communicate, form relationships and tolerate change.

The kind of intensive therapy that Mrs. Chase has arranged for her son was

first developed in the 1970's. The approach, called applied behavioral

analysis, breaks learning into tiny components and uses elaborately prescribed

behavioral teaching techniques, initially with one teacher for each child.

Toddlers begin by learning to imitate a simple action and eventually go on to

more

complex things like having a conversation or engaging in pretend-play

activity.

For the parents of these children, winning the insurance battle is crucial

because therapy can easily run into tens of thousands of dollars a year over

many years. And the window of opportunity for treatment may be small: most

experts say that the younger the child, the greater the response to therapy.

Several states, among them California, Texas, New Jersey and Connecticut,

require health plans to cover treatment. Many of these state mandates,

typically enacted despite stiff opposition from insurers and employers' groups,

are

rooted in state laws passed since the late 90's that required mental health

coverage comparable to benefits for physical ailments. Employers and

insurers have said that they plan to lobby legislatures in Indiana and other

states to repeal the requirements for autism coverage next year.

Yet state mandates do not necessarily translate into coverage.

Insurers have long raised objections about the very nature of autism

treatment. , a senior official of PacifiCare Behavioral Health and

chairman of the American Managed Behavioral Health Association, an insurance

industry group, asked, " Is this really an educational service or a therapeutic

service? "

A diagnosis for autism is included in the Diagnostic and Statistical Manual

of Mental Disorders published by the American Psychiatric Association.

Treatment of some kind for most disorders in the manual is covered by health

plans.

According to Mr. , though, " most people feel it is a biological,

neurological disorder, but that cannot be proven. " He added that " we don't seem

to

have any biological treatment for autism. "

Mr. also said that some autistic children may have depression or

attention deficit disorder, as well, and can be covered for the cost of drugs

for

those conditions.

Years ago, as many as 90 percent of children identified as autistic were

institutionalized as adults. Beginning in the 1970's, researchers started

reporting striking progress made by autistic children who had received intensive

behavioral therapy.

A small study involving 19 children and 40 more in control groups published

in 1987 found that half of a group of autistic children who received up to 40

hours a week of intensive behavioral therapy were classified as functioning

normally after three years of treatment. Only 2 percent of the children in

the control group reached that level.

Other studies of that treatment approach have also reported positive results

for many children, but researchers have had difficulty setting up studies of

statistically comparable groups, including some willing to forgo the

intensive therapy.

" We couldn't leave the house when was 2, " said Beth T. Sigall, who

lives in northern Virginia. " If it were not for the therapy, there was simply

no way we could have had a respite from caring for him. Now he is 5, in

kindergarten and can function like a 5-year-old. "

The one-on-one applied behavioral therapy part of 's treatment has

been completed. Now he receives speech and occupational therapy and help at

home with reading and handwriting. But Mrs. Sigall said her Blue Cross plan

still owed her $12,767 for therapy from February 2003 to January 2004.

Cases like that of Sigall are not enough to convince most insurers

that autism treatments - even if a doctor says they are necessary - should be

covered. Also, officials at most health plans are unwilling to talk about

their coverage for fear of attracting families with expensive needs. A

spokeswoman for Cigna said that under federal privacy rules, the company could

not

discuss the specifics of Mrs. Chase's fight to obtain coverage.

Parents say treatment costs often exceed $25,000 a year, forcing some

families to drain college and retirement savings and take on second mortgages.

For insurers, the problem is that while " behavioral therapy may be helpful

for kids in certain ways, " Mr. said, " there really isn't evidence at

this point to support that it is effective for autistic kids in general. "

Still, he acknowledged that " we know there are ways that kids can benefit

from early interventions, school-based intervention, combinations of speech

therapies, occupational therapies. "

To help resolve the debate, Mr. said the industry association is now

" looking for two well-controlled studies by two independent research teams to

validate that it is effective. "

The first results from a randomized study - overseen by researchers from the

University of Rochester Medical Center involving intensive therapy for 150

children, 3 1/2 or younger at the start, at 11 private and

university-affiliated autism centers - have been accepted for publication in a

professional

journal.

A separate randomized clinical trial with 48 children, 18 months to 24

months old at the start, is under way at the University of Washington, with

funds from the National Institute of Mental Health, said Geraldine Dawson,

director of the university's autism center in Seattle. " We have reason to

believe,

based on the research, that early intensive behavioral intervention is quite

effective for many kids with autism, " she said.

Not every child responds to the program, Ms. Dawson said, but some children

who receive early intensive behavioral therapy make significant progress and

are then able to go into a regular classroom.

Insurers say that even if the treatments are effective, there are too few

people trained in the field. Autism therapists, Mr. said, " often are not

licensed professionals. "

" It may be somebody with a bachelor's degree, " he added, though that may be

changing as autism treatment becomes more common. The University of

Washington's autism center, for example, is training people with graduate

degrees to

design programs for individual children and to train and supervise certified

paraprofessionals who provide the therapy in a child's home, Ms. Dawson said.

There are similar training programs at other schools, including the

University of Rochester, U.C.L.A., Rutgers and universities in Kansas, Texas

and

Michigan.

Across the country, a handful of self-insured employers including Microsoft,

Eli Lilly, the Arnold & Porter law firm in Washington and Agere Systems, are

paying for applied behavioral therapy.

Microsoft provides services with a somewhat flexible three-year cost limit

of $70,000 for every family that has an autistic child, a company spokeswoman

said. The three-year coverage includes 85 percent of costs up to 180 visits

with a program manager and 1,350 visits with a therapy assistant, she said.

" I never see a bill, it all goes straight to our insurance plan, " a

Microsoft employee, Brewer, said. Her daughter , 4 1/2, goes to a

free

preschool where half the children are autistic or have other special needs. Ms.

Brewer said she felt lucky. " I feel like I'm working for the benefits, " she

said.

Fade, a senior vice president at Microsoft who has an autistic

child, persuaded the company to cover such treatments. Mr. Fade and his wife,

, also gave $5 million, matched by the Bill and Melinda Gates Foundation,

to

the University of Washington to help finance Ms. Dawson's work.

Traditional health plans, by contrast, have very limited or no coverage,

said Sperling, a health care specialist at Hewitt Associates, the big

benefits consulting firm based near Chicago. Visits may be limited to 60 a

year.

Blue Cross officials in land and Indiana, for example, said they

covered autism therapy in those states, where the legislatures have required

it.

But they said they did not pay for behavioral therapy in states where it is

not required. Similarly, Cigna said it covers treatment for autism " in states

where it is mandated " and for employers that request the coverage. In

Minnesota, which requires the coverage under a mental health law, some insurers

have

paid in varying degrees for autism therapy.

While waiting for the outcome of clinical trials, some private insurers have

pushed parents to seek care through special-education classes in schools and

reimbursement from state Medicaid programs, both of which vary widely across

the country.

The land education department, for example, pays for as much as 30 hours

a week, including time at school, of one-on-one therapy for 900 children

with varying degrees of autism, as long as they meet annual eligibility

criteria. But the land program does not have enough money to cover 3,184

other

students with autism. Louisiana, with less money, could not even find

psychologists willing to accept the state's low payments, said Nell Hahn, a

disabilities lawyer in Lafayette, La.

The federal government has come down on both sides of the debate over

payments. TriCare, the health system for the military, requires coverage for

behavioral therapy for the children of parents on active duty. But the Federal

Employees Health Benefits Program is resisting efforts by a group of families

in

northern Virginia to add autism therapy to the list of required benefits.

The group of families said the surgeon general's Web site indicated that 30

years of research had demonstrated the effectiveness of applied behavioral

methods, and studies in the last 10 years showed positive outcomes with very

young children with autism.

But the Office of Personnel Management, which runs the federal employees'

benefits program, dismissed the treatment as inadequately proved. In a letter

in October to Representative P. Moran, Democrat of Virginia, C.

Gartland, an official at the personnel office, said an unnamed consultant had

indicated that behavioral therapy " has not been proven in randomized

experimental trials as beneficial. "

The argument over coverage is so fierce because 90 percent of private

insurance is still aimed at serving healthy people, said Crowley, a

health

policy researcher at town University. And autism, like certain other

conditions, said Sara Rosenbaum, a professor of health law at

Washington University, " is on the outer limits of what the commercial insurance

market

will handle. "

Sorry for posting this article again, but the stories are the same even two

years later. CReece