NYT: Dealing With the Financial Burden of Autism

[Guest guest]

Didn't see this posted - sorry if its a dup

NY Times

January 23, 2010

Patient Money

Dealing With the Financial Burden of Autism

By WALECIA KONRAD

When Jeff Sell's twin sons were found to have autism 13 years ago, he, like so

many other parents in the same situation, found himself with a million

questions: Will my children be able to function? What are the best treatments

and where do I find them? How will this affect the rest of my family?

And besides those monumental worries, Mr. Sell kept asking himself another

fundamental question as he began the long string of doctor and therapist visits

with his sons: " How in the world am I going to pay for all this? "

Autism trends, treatments and therapies routinely make headlines. Often

overlooked, though, is the financial burden for many families with autistic

children.

Treatment is extremely expensive. Direct medical and nonmedical costs can add up

to as much as $72,000 a year for someone with an extreme case of the disorder,

and even $67,000 a year for those on the lower end of the spectrum, according to

a study from the Harvard School of Public Health.

That figure includes medical costs like as doctor visits, prescriptions and

occupational and speech therapy, as well as expenses for things like special

education, camps and child care, said Ganz, the author of the study, who

is now a health care consultant.

" It can cost $3.2 million to take care of an autistic person over the course of

his or her lifetime, " the study said.

More families are grappling with the disorder than ever before. One of every 110

8-year-old children in the United States has been diagnosed with autism — and

one of every 70 boys, according to the latest survey from the Centers for

Disease Control and Prevention, released last fall. That is up from one in 150

children in a comparable report released in 2007.

" The numbers are just amazing, " said Pat Kemp, executive vice president of the

advocacy group Autism Speaks, " Unless we attack this like a national health

crisis, we're going to have a huge economic crisis on our hands. "

Certainly families feel the financial strain. Many health insurance policies do

not cover autism treatments, while those that do often have severe limits. And

there is very little government or private financial assistance available.

In many cases these children will need assistance all their lives, Mr. Ganz

points out. Making sure there is money for the future is something else parents

worry about.

When his sons received their diagnosis, Mr. Sell was practicing personal-injury

law in Texas, and he began paying for many of their treatments from his own

income and savings. In 2005, as he became more involved in autism issues, he

joined the staff of the Autism Society of America in Bethesda, Md., where he is

now a vice president.

His sons are now 15. One, Joe, is talkative and considered " high functioning. "

The other, Ben, is nonverbal with profound autism.

" What works for one child doesn't necessarily work for the other, " Mr. Sell

said. " So we're talking about finding and paying for twice as many treatments. "

In the early years, the Sell family had some autism coverage under Mr. Sell's

health insurance. But claims for certain therapies, tests and treatments were

often denied. " I was very aggressive about appealing those denials, and I often

won, " Mr. Sell said.

But even with coverage, Mr. Sell found he needed to pay enormous amounts out of

pocket to come close to giving his sons the 20 to 40 hours of behavioral

therapies each week that were often recommended. (Eventually, as discussed

below, Mr. Sell was also able to obtain financial assistance through a special

part of the Medicaid program.)

Although direct financial support may be scarce and hard to obtain, there are

several autism information and advocacy groups that routinely help parents

navigate financial hurdles. Here is a road map parents can use to get started.

CHECK YOUR INSURANCE Coverage for autism treatments is still far from common,

but it is improving. Some large employers offer policies that cover treatment,

and 15 states have passed laws mandating at least some autism-related coverage.

The Autism Society's Web site lists the relevant states. (That section of the

site is still under construction, but you can scroll down to see the states.)

In addition, Maine and New Hampshire both have legislation pending that could

pass soon, Mr. Kemp said.

If you do have coverage, watch for limitations. Because treatment for autism is

so individualized, there are few uniform standards or protocols for insurance

companies to follow. That means parents often have to argue that a certain

therapy or treatment is necessary. Also, be sure to check any caps on treatment,

Mr. Sell warns. What may look generous — say $36,000 a year — can be spent

quickly. Or there may be limits on how many sessions of a particular type of

therapy will be paid for each year.

And you will want to coordinate your insurance coverage with the services you

may be receiving from your child's school. If an occupational therapist sees

your child regularly in school, for example, you may want to save your insurance

dollars for social interaction therapies.

In addition, you may need to be especially aggressive about coverage for some

medical conditions. Gastrointestinal problems, for instance, are extremely

common in autistic children.

Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son.

The insurance company had denied the claim for gastrointestinal testing, saying

that because Ben's behavior problems were related to autism, the testing was not

covered.

Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong,

appealed and won. The tests showed that Ben had ulcers and lower-intestine

problems that still occasionally flare up and require treatment.

MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism

without taking the family's income into account — only the child's diagnosis.

This is usually reserved for fairly serious cases but is worth exploring, Mr.

Sell said.

" This was a godsend for us, " he said. The waiver, he said, allows families

access to services that private insurance won't cover and that they wouldn't be

able to afford otherwise.

With the waiver, Mr. Sell was able to get more home-based speech and

occupational therapies for his sons to supplement the sessions they receive at

the public school they both attend. Medicaid also covers recreational therapy

during which a specialist takes Ben and Joe on hikes and other outings, giving

the parents some much-needed downtime.

To see if your child is eligible for a Medicaid waiver, go to the Centers for

Medicare and Medicaid Services Web site and click on your state.

Because Medicaid is one of the few government lifelines available, waiting lists

for waivers can be extremely long. Mr. Sell, for example, waited nine years to

get waivers for his sons.

" Just go ahead and get on the list and try not to be too discouraged, " advised

Mr. Sell. " Many states are moving faster now. "

GO LOCAL Many autism advocacy organizations, including Autism Speaks and the

Autism Society of America, are affiliated with local chapters throughout the

country. In addition, most states, counties, towns and cities provide lists of

local autism resources and support groups.

It is people in the local groups who will know all the resources available. They

can also help you keep up with the latest research, so you don't spend time and

money chasing the many unsubstantiated " cures " out there. They will also have

lots of practical advice, like which dentists, optometrists and even barbers are

good with autistic children.

" You think going to the barber is no big deal? " Mr. Sell asked. " Just try it

with an autistic child. "

OTHER RESOURCES A handful of organizations like Easter Seals and the National

Autism Association offer financial help to struggling families. Autism Family

Resources and United Healthcare Children's Foundation also offer grants to pay

for autism treatments