Able Advocates of Fresno Aids Families with Special Needs Children
Dec 26, 2016 11:00AM
By Jordan Venema
More Than Able
By Jordan Venema
Photos: Brittany Wilbur
Parents know. Besides the obvious connection that a mother shares with her child, parents just know when something isn’t right.
When Katrina Oh’s son began showing signs of delayed development, she wasn’t being hypersensitive. Oh knew something was wrong. Her third child would later be diagnosed with agenesis of the corpus callosum, meaning the middle part of his brain was missing.
But on paper, under existing insurance codes, there was no way to classify his condition. So for the first two years, the Ohs paid out of pocket for equipment, treatment, even horse therapy.
“For about a year and a half, there was a period that we were making payments, doing what we could,” says Oh. “It took a toll on the whole family. It got to the point that we couldn’t afford it.”
Ultimately, a cerebral palsy diagnosis allowed insurance to cover expenses, but through her experience, Oh realized that many other families were facing similar issues with insurance red tape. In 2011, Oh began a support group.
“Anytime that I was in clinics, I ended up in waiting rooms and saw other distressed parents, and I reached out and finally decided to do a potluck at my house. So for about a year, I’d have a potluck with these ladies and we would just vent,” says Oh. “But it got to the point that we were having the same discussion every month about being denied services, denied equipment, and that’s when I decided to file for a nonprofit.”
In 2013, Able Advocates became an official 501(c)3 nonprofit that is unlike any other. It isn’t modeled off of an existing organization, but rather grew organically from parents’ experiences and children’s needs.
“It grew out of being a special needs parent,” Oh states simply. “There is nothing like us.”
Looking back, Oh never imagined that the first potluck, which included six families, would serve more than 1,000 families throughout California in the last year.
Think of Able Advocates like Google, a search engine for parents with special needs. As an aggregate of personal experiences and information, Able Advocates offers connections and resources to parents who find themselves in unknown territory.
“A lot of the time, when you’re newly diagnosed, you don’t know where to go, so we just make sure families get what they need,” explains Oh. “I don’t have a lot of red tape, so if the hospital calls me and they see a need, we’re there. We try to fill the gap. We want to make sure that those families are receiving services during that wait period.”
In addition to running support groups at various locations, hosting guest speakers and helping families get in touch with the services they need, Able Advocates offers the equipment closet.
“That’s pretty much my baby now,” says Oh. “For families that are waiting for authorizations through insurance, which literally can take a year, or for families that have been denied, we’re getting them the equipment and fitting them with a licensed physical therapist.”
According to Oh, an electric wheelchair can cost up to $30,000, so through donations and sponsorships, Able Advocates has gathered a collection of walkers, standers, wheelchairs and other equipment that can be “molded for the specific child.” Most equipment is donated, so much of the money raised by Able Advocates goes back to repurposing equipment for children in need.
So what keeps Oh going? “Passion,” she says firmly. “When you drop off a piece of equipment to a family, and you see the face of that child light up, that’s everything for me. Giving back is huge, and I couldn’t see another family go through the torture that I went through.”