Where Is All the Money?

by Christina Medvescek on July 1, 2003 - 12:49pm

Money can't buy love, but it can buy a van with a lift and a remodeled bathroom. Money is the root of all evil and of all wheelchair ramps. Money can't buy good health but poor health is easier to take when you've got money.

So where is all the money? Alas, this story doesn't contain the complete answer. But it does offer a variety of ways and places to look for little pots of gold.

Learn the money mindset

Looking for money takes faith. You've got to believe you're going to get some. If you get caught up in the reasons you can't find money — too busy, too worn out, too confused, too disabled, too poor, too "rich" (see "From Where I Sit: The Middle-Class Trap") — you won't be able to sustain the search. "Our doubts are traitors and make us lose the good we oft might win," warned Shakespeare.

Instead, adopt the money mindset recommended by Victor Boc in his unconventional finance book How to Solve All Your Money Problems Forever (Perigee Books, 1978). Create a precise image of what you want and then persistently see yourself having it. No matter how twisted the path, keep believing you'll get there.

When a funding request is turned down, see the word "no" as a detour, not a dead end. "Don't take no as an answer," emphasizes Mike Buche, 38, of Oakdale, Minn., who had to acquire a power chair and a modified van because of his limb-girdle muscular dystrophy (LGMD).

"Be vocal but not disruptive. Yelling, screaming, hollering doesn't do any good. Just stay with it. Call a different person and call a different one. Talk to people who've done it in the past. Get your voice out there, get your name out there, then you will be recognized. There's funding out there to be had, but people don't know it."

Gather money here and there

About two years ago, when Buche ("Boo-shay") accepted the fact that he needed a power chair, he required some specific equipment and modifications to keep working as manager of an auto body shop. To drive to work, he needed a modified van: $64,500. Once there, he needed a stand-up power chair: $27,000. In his office, he needed a power door opener ($2,800) and a wider bathroom doorway ($2,000).

Mike Buche

Not having a spare $96,300, Buche figured he'd gather money and help from a variety of sources. "I didn't look at the finances of it," he said. "My thought was that it would make my life better, no matter what it cost. I had confidence it would all work out somehow."

First, Buche looked to health insurance and government programs. His insurance agreed to pick up half of the cost of the chair. Minnesota Vocational Rehabilitation Services agreed to pay 68 percent of total expenses for the chair, van conversions and building modifications. This meant Buche needed to cover 32 percent of the van and office modifications, 32 percent of the remaining costs of his wheelchair, plus the full cost of a basic van — roughly $45,000.

So Buche went looking for money. He convinced his insurance company to reclassify his chair "from a K11 to a K13," indicating greater medical necessity. This increased the insurance coverage from 50 percent to 80 percent of the cost. MDA provided $2,000 toward the purchase of his chair. His employer offered to pay for the power door opener and door widening. Buche traded in a vehicle and financed $23,000 to buy a new Ford E150 van. A Ford Motor Company rebate shaved $1,000 off the cost of van modifications.

He was now short only $6,000 to $8,000.

That's when a group of friends stepped up and offered to put on a fund-raiser. Initially Buche and his wife, Laura, said, "thank you but no," but his friends insisted. The group rented a hall, got a band, served food and cocktails, and held a silent auction of donated items. The event raised $21,500, which paid off the rest of Buche's assistive equipment costs and took a big chunk out of his van loan.

Buche admits it was tough letting his friends raise money for him, but he urges others not to discount that option. "People are willing to give, they really are."

At the end, his out-of-pocket share of the initial $96,300 came to around $10,000 for his van, which he financed. "But that's nothing, because my life is unbelievable now compared to before I got the wheelchair and van," he says.

Beat the bushes

Raymon Villegas in his new van

Last year, Anneliese Villegas also needed to raise funds to buy an accessible van for her son Raymon, 10, who has Duchenne muscular dystrophy (DMD). Unlike Buche, Villegas couldn't count on a government program and a large group of fund-raising friends — just herself, a friend and plenty of moxie.

Villegas, of Ashland, Ore., figured the family budget could handle about $200 a month in payments. She started her money hunt with this figure in mind.

Luckily, she wasn't entirely new to fund raising. Several years earlier she had persuaded local lumber companies to donate $1,000 in materials for a wheelchair ramp. She had an idea that if she asked enough sources, she would get what she needed.

First she checked with state agencies, but "we either didn't qualify or they didn't fund what we needed," she says. She wrote to big corporations, even a talk show host, but nothing came in. "Finally my girlfriend said, Let's open up a donation account at the bank and focus on the community."

Villegas estimates she spent about $150 on local fund raising. She made up fliers with a picture of Raymon and an explanation of why he needed a van, and posted them in laundromats, grocery stores and bulletin boards all over town. She and her friend combed the Yellow Pages for local businesses and sent them letters. They took their appeal to every potential source they could think of.

A big break came when the local newspaper ran a front-page article about their quest. "That's when people began to give," Villegas says. "We would get $10 donations with little notes. A variety of people who had known about us now had something to give to, and gave $100 checks."

Her small church raised $2,000 by taking a special collection. Her parents gave several thousand. Within three months, $10,000 came in.

Villegas found a 1996 Ford Econoline commercial van for $13,000. Adding a lift came to about $5,500. After donations, her payments came to $200 a month.

Villegas discovered several successful strategies in her search.

Smaller local businesses often are more generous than the larger ones.

Tell people exactly what you plan to get. For example, when approaching the lumber companies, she took a copy of the plans for the ramp, with all the materials outlined.

Don't ask for the whole amount. "With the lumber companies, I asked if they would donate a portion, like four 4-by-8s."

Several people suggested she hold a raffle at the local stock car racetrack. "Apparently, racetracks are renowned for helping with those kinds of things," she said, adding she never tried this option because she reached her goal.

Don't be afraid to ask. The difference between success and failure often is your ability to keep asking.

Don't give up. "Basically," she says, "you work your fanny off."

Leverage your resources

When Mark Reiman's amyotrophic lateral sclerosis (ALS) required him to get a power chair a little over a year ago, a friend offered to write a letter to raise money for a van. "But we didn't want people to give us money," says Mark's wife, Julie.

Instead, the Everett, Wash., couple decided to use money they didn't have yet — the payoff on Mark's life insurance policy.

"In the letter we said what we needed was a loan. We would pay them back from Mark's life insurance after he was gone."

The appeal raised $25,000. Some people gave money outright; Julie will repay the rest when the policy pays off. (Mark passed away on April 29.)

Julie took the $25,000 to a dealership that specializes in accessible vans. There was only one van on the lot that would suit Marks 6-foot-plus height — for $36,000.

"I told them this is how much money we have, plus I can pay $100 a month for as long as it takes to pay off the rest. They said yes. We got a 2000 Dodge Caravan and it was absolutely perfect," Julie says. "This really saved us in the last year."

The Reimans also needed personal attendant care. The family had a Share the Care group (an organized group of volunteer caregivers). But as his ALS progressed, Mark's needs outstripped the volunteers' ability. This time the couple leveraged the money in their home. Refinancing gave them funds not only for caregiving, but also for other pieces of adaptive equipment not covered by insurance.

Think big

For pure creative energy, few people can beat Stephen "Hurricane" Smith. A professor in the M.B.A. in Leadership program at Franklin Pierce College in Rindge, N.H., Smith, 56, is known for his passionate approach to teaching business students. When he received a diagnosis of ALS, he applied that same whirlwind enthusiasm to his own case.

Stephen Smith

Smith knew that sooner or later he would need to quit work, meaning a 40 percent income drop and loss of his work health insurance. He knew he was going to need a power chair, van, home modifications, communication device, adapted computer software, other assistive devices, plus caregiving help. He also would need to fund vitamin supplements not covered by insurance. He decided he had to get busy covering those needs while he could still walk and talk.

"I figured I was going to need $200,000 right off the bat," he says, for equipment and modifications and to create a revenue-producing business, because "you can't keep fund raising forever."

Smith and some of his students created a nonprofit organization, then designed a multilevel marketing plan "kind of like Amway," he explains. "You get some hard workers at the top and then build a pyramid below them." At the top are 15 people charged with finding 100 Cycloneers — people who will commit to raising $2,000 each for Smith's fund.

A Cycloneer's job should be easy, Smith says. "They can call 20 friends and say, Come on over for a wine-and-cheese-tasting party which will cost you a $100 donation, and here's why. Boom — their total involvement is done in a weekend."

Volunteers who can't make that level of commitment are invited to become Blusteroons, who help out however they can: giving money, selling Smith's fund-raising cookbook or decorative pin, or donating items to sell in his virtual yard sale. The cyber yard sale, located on his Web site, sells donated antiques and used items. A local consignment shop also sells items donated for his fund.

Smith's goal is to create a business, such as importing unique goods to sell on the Internet. In addition to funding his ongoing needs, he hopes this business will generate seed money to spread among others coping with ALS.

"I want to create a business model that people with ALS can use to create their own revenue-producing business, and lend them seed money to get started," he says. "In this way people can have their own cash-generating machine and won't have to rely on donations from year to year."

Smith fully expects to find the funds he seeks.

"This approach will be very successful," he says confidently. "My advice to people is to be creative. You can't piddle around. You have to think huge."

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