Spokane mom helps launch dyslexia group with ways to offset costs of testing, literacy support

Drew and Lisa Repp knew something wasn’t right when their first son fell behind in school, starting in kindergarten. While bright in many ways, he struggled with reading.

They asked about dyslexia, but the question got brushed aside with a comment that he was just a young child having trouble focusing, Lisa Repp said.

“We were told, he’s just a kid, and it just hadn’t clicked for him yet; it would come,” she said. “That was a tough call, because I knew there was something more going on.”

About two years ago, their son at age 8 did get a diagnosis of dyslexia, a neurobiological learning disorder that affects reading. Repp at first felt alone in finding dyslexia resources but eventually tapped into connections. A year ago, Repp and three co-founders formed INW Dyslexia Alliance to advocate and support people with dyslexia, families and teachers in the Spokane-Coeur d’Alene region.

The nonprofit also offers low-cost dyslexia evaluations, and by this fall, it will add literacy intervention sessions. One goal is to make those services more available and affordable.

Payments for evaluations and reading support fall under a donation-suggested amount, so financially strapped families can get help. To reduce costs when possible for anyone, the nonprofit is building up a client assistance fund, supported by any payments made above suggested amounts, and through fundraisers, grants and donations.

“Up to 20% of people are impacted by dyslexia – there are stats on our website from the Yale Center – so 1 in 5 are impacted, and it’s all populations across the globe,” said Repp, the alliance’s executive director.

“It’s a very common learning difference. However, it’s rarely talked about,” she continued. “That didn’t make a lot of sense to me as a parent who found out my son in kindergarten was struggling in school. I felt like I was on an island just fighting for this bright child who shines in many different areas until it came to reading.”

Reading requires the brain to connect letters to sounds, put those sounds in the right order and pull words together into sentences and paragraphs to comprehend meaning. People with dyslexia have difficulty matching the letters seen on the page with the sounds those letters and combinations of letters make, the Yale Center for Dyslexia & Creativity says.

It has lifelong effects but has no connection to overall intelligence, that center says. Often, those diagnosed are fast and creative thinkers with strong reasoning abilities.

Lisa Repp said their son was diagnosed at the Winston Center, a separate Spokane service that supports children and adults to address, manage and overcome learning and attention challenges.

Today, the Repps know all three of their kids have dyslexia, including eldest son Lauten, now 10, 8-year-old son Brady and 6-year-old daughter, Taylor.

Earlier diagnosis and literacy intervention sessions make a difference in a child’s confidence, Repp said.

Other local providers can do a dyslexia evaluation, which typically costs $1,800 or more, she added. Many providers don’t accept Apple Health state insurance for that testing, she said, and families without insurance coverage have to pay cash.

The alliance hired a speech language pathologist in February to do such testing, with a suggested “donation” range to cover operational cost and pay toward the overall client assistance fund.

“We suggest a donation between $900 and $1,100 for an evaluation,” she said. A minimum would be $700 for just the nonprofit’s operational cost for a single evaluation, but people who can’t afford that are asked to give what they can, Repp added.

Its literacy intervention services have a similar model, with a suggested donation between $55 and $65 per session. Anything over that amount goes to help other families through the client fund. Other providers typically charge $100-plus for a similar reading intervention service, she said.

“When somebody is diagnosed with dyslexia, there is a very specific model of learning that is best for them in order to further along their literacy,” Repp said.

“This is a science-based model that we take students through. So beginning this fall, we are hiring literacy specialists to work with students who have a diagnosis twice a week for 30-minute sessions going through the Wilson Reading (System) program, which is a national curriculum for children with these specific needs,” Repp said. “We follow that again using the donate-what-you-can model to help make this service more affordable for families.”

Pledges above minimums for both programs are tax-deductible donations.

The literacy specialists will work with students either virtually or at one of its different locations being set up in Spokane. It’s eventually adding outlying areas.

“We have a new location in the Hillyard area on Francis that will be used for evaluations, interventions, training and meetings,” Repp said. “We’re partnering with St. Charles (Catholic) School to house one of our literacy specialists at that school to work with students and with those who are nearby. We’re also looking to have a specialist near the Coeur d’Alene area, once we have the right space. Currently, she will be doing that work virtually.”

Repp said the group also wants to support teachers in training and strategies to help students diagnosed with dyslexia. She said educators might have received little to no instruction at universities regarding dyslexia. The overall work needs a community approach, Repp said.

“How do we create a community in our area so we can knowledge-share, grow and help, so people don’t feel alone?” she said. “We can get better at supporting these kids and this community, because it doesn’t stop in childhood. In the workforce, people have dyslexia their whole lives. Dyslexia really impacts how they see the world, how they see literacy and how potentially they work.

“There is such a need to talk about it more,” she continued. “We want to highlight your strengths and skill sets … and get you help for those areas you need accommodations for.”

People who want more information can fill out a contact form on the group’s website, inwdyslexia.org. The group also posts to Facebook and Instagram and hopes to do more with libraries, Repp said.

“There is free access to audiobooks, and resources to help bridge the gap,” she said. “I’ll put a book in front of my eldest son and he wants nothing to do with it, but he’ll listen to audiobook after audiobook. They’re his lifeline.”