NAP- Neighborhood Alliance of Pawtucket

Financial Freedom?

Is Guardianship better than Independence if you're disabled?

Pittsburgh Tribune-Review

Money matters get muddled for disabled

By Richard J. Dalton Jr.
NEWSDAY
Sunday, March 16, 2008

NESCONSET, N.Y. -- Sean Beaudoin, 25, has an autism spectrum disorder, but with help he has become fairly independent.

He has his own car. He works 20 hours a week as a kennel assistant. He has a credit card in his name, although his mother keeps it. And he has a good credit rating.

But his parents, Curtis and Paula Beaudoin, recently experienced the downside of such autonomy for their son, who lives with them in Nesconset.

Last month, Sean walked into Hustedt Chevrolet in Centereach and traded in his fully paid 1997 Ford Explorer for a $2,500 credit toward a 2002 Chevy Malibu with 50,000 miles. He owed $11,400 on the Malibu.

After Beaudoin's mother discovered the purchase and complained to the dealership, the manager agreed to lower the total price to $8,550. That's more than the car's $6,940 retail value in excellent condition, according to Kelley Blue Book.

Paula Beaudoin said she agreed to the purchase because the dealership refused to reverse the deal. Hustedt Chevrolet has an unsatisfactory record with the Better Business Bureau of Metropolitan New York for failure to respond to complaints.

Edward Reyer, general manager of Hustedt, said Beaudoin seemed more intent on getting the price lowered than on reversing the deal. And he said the price had nothing to do with Sean's condition.

"Anybody can be overcharged," Reyer said. "Forget about autism. If you come in here and you like a car and you're given a price -- no matter how much it's marked up -- and you accept a price, you're accepting the price, no matter who you are."

Sean Beaudoin had "everything we need," Reyer said -- a driver's license, good credit, a job and car insurance. "He's as normal as normal can be as far as having the proper stuff."

The young man's parents said his condition, called "pervasive developmental disorder not otherwise specified," makes him unable to understand how to engage in a complex financial transaction, such as a car purchase, and leads him naively to trust others. Such traits can make him susceptible to sales pitches as well as to people intent on taking advantage of him. For instance, Sean Beaudoin told a reporter he didn't need to research the car's value because the salespeople have a list of prices to show buyers.

Sean's financial difficulties are common among young adults with autism spectrum disorders, said Pat Schissel, who runs the Asperger Syndrome and High-Functioning Autism Association, based in Bethpage. "They want to do what they think a 25-year-old should be doing," she said. "They will go to buy a car or think that they can rent an apartment but have no idea about all the pieces that go into it."

Thousands of children with autism spectrum disorders have reached adulthood, raising difficult issues as the children become consumers in a world they don't fully understand.

People with autism typically have a wide range of abilities, but Sean's independence is beyond the reach of many.

And for those like Sean, who are highly functioning, adulthood has the potential for newfound financial freedom. That, in turn, can lead them into contracts.

If autistic adults don't understand the nature of such commerce, their parents face the prospect of seeking legal guardianship, taking away the very independence they've dreamed of for their son or daughter.

A guardian may have the legal right to make medical or financial decisions on behalf of the person under his care. Just as a minor cannot sign a contract, neither can a person, even an adult, whose financial affairs are handled by a guardian.

"A lot of times, that can be a really difficult decision for parents," said Wendy Fournier, president of the National Autism Association, in Nixa, Mo.

More and more parents are facing that decision. An estimated 85 percent of the autistic population is younger than 18, and those diagnosed in the beginning of the wave of autism during the 1990s are reaching adulthood. The number of cases of autistic children and students served under the Individuals with Disabilities Education Act nearly doubled from 42,417 in 1997 to 79,586 in 2000, according to the U.S. Department of Education.

"I think we're on the precipice here," said Scott Bono, a Durham, N.C., resident and co-founder and chairman-elect of the National Autism Association. "At the first autism conference I went to in the early '90s, there was no discussion of guardianship. At the last one I went to in November, I had a number of people talking about this very issue."

Sean Beaudoin and his parents are considering guardianship in part because last month wasn't the first time Sean went out to buy a car.

In 2005, he signed a contract to buy one. But when the salesman called his mother to ask if she would cosign the loan, she refused. That call led her to believe that, if Sean tried to make such a purchase again, she would get another call.

But last summer, she came home to find a new pickup truck in the driveway. Sean had managed to buy it at Auto World USA in Patchogue, after trading in his Explorer.

Paula Beaudoin called the dealership and explained her son's condition. Auto World reversed the transaction, and returned the Explorer to Sean. Paula offered to pay expenses the dealership incurred, but Auto World USA didn't charge her anything.

The couple considered obtaining guardianship, but a lawyer they consulted said it would be difficult to show that Sean wasn't competent to handle his own financial affairs.

In recent years, obtaining guardianship over a particular area, such as finances, has become more common, said Marianne Engelman-Lado, general counsel for New York Lawyers for the Public Interest, a nonprofit civil rights law firm based in Manhattan.

"The law has tried to reflect a greater understanding of the capabilities of people with disabilities," she said. "The idea has been to only give guardianship on those areas over which someone actually doesn't have capacity."

Bono, the National Autism Association's chairman-elect, said he and his wife decided to obtain guardianship over their son before he became 18.

The decision was wrenching, he said.

"While we were protecting his rights for the first 18 years of his life, we were now faced with retaining guardianship and in a way withholding his rights," Bono said, "and that was very emotionally draining." Frank Ramos, general manager of Auto World USA, said businesses are reluctant to refuse service to customers they think might have a mental disability, out of concern the business could face a discrimination lawsuit.

"They've got credit cards," he said. "They have credit scores. They've had credit in the past. So we're kind of between a rock and a hard spot."

One advocate for autistic children has faced situations similar to the Beaudoins'. Linda Fulton, founder and president of the Fulton Foundation for Autism, said her 23-year-old son Dunlap, or D.J., has a tremendous ability to memorize numbers, including, she discovered, her credit card's.

Five years ago, said Fulton, of Huntington Bay, her son called a Chicago car dealer to buy a Lamborghini. The salesperson told him he needed a transport company. So he found one online, giving his mother's credit card number for the $25,000 fee. Fulton received a phone call to confirm the transaction and canceled the order.

A few years ago, her son ordered $10,000 worth of model planes, which were delivered to the house. She returned them but had to pay delivery and return shipping.

Lately, her son has been pushing to buy the Quiet Supersonic Transport airplane, the $80-million replacement for the Concorde that's to be launched in the next decade. He's told his mother he'd settle for a ride.

"He said, 'It's only $225,000 to be on the first flight,'" Fulton said. "I don't have to worry about that until 2014."

Sean Beaudoin enjoys his independence. And he's learning more, as a residential habilitator provides supervision, support and guidance, helping him with tasks including finances. On the refrigerator is a note titled "Sean's Finances: How to Calculate It and Keep Track."

"Write down everything I spend . . .," it says. "How much money people give me. How much I spend on other things."

But it's not easy, and Sean said he'd be better off with his parents having guardianship over his financial affairs. "It's a good thing," he said.