A blog provides a way for strangers to financially support each other for Autism Treatments

Posted on Aug 13, 2008 in Autism

Tori Tuncan barely knew Logan Rogers or his mom, but she posted their request on her blog:

“Logan, 10 years old, is unable to ride his bike because he has `absolutely no muscle tone.’ He needs occupational therapy. Insurance will cover it, but his mom needs $250, immediately, to pay for the evaluation up front.

“Can you lend his mom the money?”

Within eight hours, Tuncan had raised the funds for Logan’s mom, thanks to five strangers who agreed to the loans. One lender was from Oregon, another from the Cayman Islands. The rest were from who knows where.

For Tuncan, it was on to the next kid.

Six weeks ago, Tuncan quietly launched a very ambitious blog. At Lend4Health.blogspot.com, parents of autistic children who seek alternative treatments – chelation, hyperbaric oxygen treatments, visits with the Defeat Autism Now! doctors who practice “biomedical” treatments – can ask for micro-loans from Tuncan’s readers.
Those biomedical treatments are used by thousands of parents who swear by them, but they’re often difficult to get insurers to pay for because they are not accepted by mainstream doctors as safe, effective treatments for autism.

The first loan took about a month to fulfill – $266 for food sensitivity testing for a toddler named Jonathan Grant. The second, Logan’s, took just eight hours, and a third was filled last week. There are now five requests open.

The site is inspired by Kiva.org, which facilitates microloans to people in developing countries.

For a community of parents who are already comfortable getting treatment advice, sharing health problems and dishing on their kids’ diets online, this goes a step further: It gives them a chance to be actually invested in another family’s autistic journey.

“Everybody’s watching to see if this works,” said Lisa Ackerman, the founder of the local group Talk About Curing Autism, which favors biomedical treatments. “We want it to be successful because it’s such a good idea. Money should not be a barrier to good medical care.”

Tuncan is a consultant in the Washington, D.C., area. She has a 3-year-old son with a sensory processing disorder (not on the autism spectrum), though she suspects he had autism. Because her son is on a gluten-free/ casein-free diet (a biomedical treatment for autism), she spends a lot of time on message boards with parents dealing with autism. She writes separate blogs about his diet and – really – poop.

“Everyone (on the message boards) is like, ‘We’re $30,000 in debt, we had to sell our house, our car, we’re living with my parents, insurance doesn’t cover any of this stuff,'” she said. “Most stuff you do with a DAN! doctor is not covered by insurance. Getting your olive leaf extract is not covered by insurance … But you do what you gotta do because it’s your kid.”

That describes Kitty Grant, a Florida mom whose son was diagnosed in the spring. When she heard how much it would cost to get biomedical treatment, “I almost fell out of my chair. But we had no choice. I’d sell my kidney.”

She and her husband are selling their car to pay for treatment. Tuncan approached her on a message board and invited her to post her need on Lend 4 Health.

“I was a little trepidatious at first,” she said. “You have to be skeptical anytime someone is willing to say ‘yes, we’re going to try to help you.’ Because, honestly that’s not frequently coming these days. Mostly, it’s ‘we’re going to try to screw you and see what we can’t give your kid.’ But I’m willing to be open to anything to try to help him.”

The $266 she needed came through after the site’s first few weeks. One of the lenders, Will Jacobs, has lent to every child who has appeared on the site, under the name “Willem.” He also has a son with autism, and he struggles to get the treatment he needs in the Cayman Islands, where he lives.

“The best part of (Lend 4 Health) is that the children are the ones that benefit from this the most, and their families get to see the re-birth of their children,” he said. “I slowly see this happening with my son.”

Loans are made and repaid through PayPal, and borrowers sign a written loan agreement. The terms of the loan are set by the borrower. One of the moms is paying it off in three months; another, over the next year. Do they pay interest? “Of course not,” Tuncan says.

She admits she rushed into the idea. She requires references, and she checks them out, but she doesn’t know what she’ll do if somebody defaults. “I have a FAQ section I haven’t done yet, and I know that’s one of the questions.”

But she doesn’t think that’ll happen. “I don’t think people will. It’s such a big deal. These moms are excited, like ‘Oh my gosh I can’t believe a bunch of strangers will lend me $10 to help my kid.'”

Ackerman, who is not involved with the site, is also concerned about that. TACA funds treatment for some low-income families on the spectrum, but it goes through layers of review first. The families must show tax returns and pay stubs to prove the financial need; TACA’s payments go directly to the doctor or vendor to ensure it is being used on treatment, not credit card bills (or a high-definition TV).

Kitty Grant says repaying the loan is her first priority. Per the terms of the loan, she’ll repay the lenders in a lump sum in February, when she and her husband get their tax rebate. By then, she’ll be living in Maryland – she heard the treatment options are better there.

“Honestly, after we pay everyone back, we’re thinking about putting some money back into (Lend 4 Health) to help somebody else. It’s a karma thing.”

By SAM MILLER
The Orange County Register
Contact the writer: sammiller@ocregister.com or 714-796-7884