Impacting Lives for a Decade
Ten years ago in a Sunday school room at Zion Evangelical Lutheran Church in Bethlehem, Kathy Shapell started the Augusta Levy Learning Center, named for her mentor, with three therapists and two children diagnosed with autism.
Using an evidence-based therapy called Applied Behavior Analysis, developed at the Lovaas Institute in California, the therapists worked one on one with the children, a luxury by most education standards. But ABA was – and still is – the only method that has proven to help many of these children function more like their typically developing peers.
While that hasn’t changed, plenty of other things have in the past decade. For example, people are much more aware of the disorder now. In 2005, the autism rate was 1 in 166 children. Now, the Centers of Disease Control and Prevention classifies it as an epidemic, and the rate is 1 in 68.
Although the causes of autism are still unknown, advances in the last decade have led to early diagnosis in children as young as 2 years old, Shapell said, and the American Academy of Pediatrics now recommends screenings at 12- and 15-month checkups.
“When we first started, kids weren’t getting diagnosed until they were 4, 5 or 6 years old,” and the amount of development they had to make up was extensive. “The earlier the diagnosis, the earlier the intensive intervention, the better the outcomes,” Shapell said.
In addition to these improvements, many states, including West Virginia, now have requirements that insurance cover autism services, such as Applied Behavior Analysis.
Expansion on Horizon
Today, the Levy Center is located in the 4,800-square-foot lower level of the former Sacred Heart Catholic Church in North Wheeling and has 24 employees, including Shapell, 19 therapists, two office workers, a clinical director and a development director. And it continues to grow.
The community has been overwhelmingly supportive through the many fundraisers and services they provide to the center, Shapell said. And thanks so that support, the center is now able to help more kids with autism.
“We’re celebrating our 10th anniversary by expanding our services,” Shapell said. “The best thing to do is continue what we do well and continue serving more children.”
Under a pilot program this spring, the center increased the number of children it serves from 15 to 19. The pilot program was an experiment to determine if dissecting a larger therapy room with a partition and placing two students and two therapists in each room would affect the children’s progress. Prior to that, only one therapist and one child occupied each room.
“We’re very scientific about everything we do. We didn’t just go willy-nilly dividing things up. We wanted to ensure quality first,” Shapell said. “We wanted to ensure there wasn’t regression. In fact, they showed progress. They benefited socially, which is good. … It worked beautifully, and it really exceeded our expectations.”
The staff recenlty divided four additional therapy rooms.
“We are in the process of hiring staff. Over the summer, we anticipate taking four to six new children.” This would bring the number receiving life-changing therapy from 19 to 25. These numbers reflect not only the children served at the center, but also children who receive therapy at home and in public and private schools.
They are not huge numbers, admittedly, and about 100 remain on the waiting list.
“It’s never enough, unfortunately,” Shapell said. But it’s progress.
“Look, you’re helping!”
“Say thank you!”
These words could be heard Thursday morning from the lobby of the Levy Center. Therapists in a nearby room were observing 4-year-old T.J. and 6-year-old Adrienne playing together- social skills are a vital component of therapy with children on the autism spectrum.
As a visitor entered with a camera, the two children engaged immediately with her – Adrienne wanted to pose while T.J. clearly did not, but he warmed to the idea quickly. Both smiled directly at the camera. T.J. was so excited to see the images, he ran to look at the camera’s small screen before the visitor could snap his picture.
A few years ago, these kids may not have made eye contact, let alone smiled at and interacted with a stranger. But through intensive, individually tailored therapy focused on language, attention, socialization and education, for example, most of the children who enter the center learn not only social skills, but also their ABCs, 123s and other critical skills to become school-ready.
Shapell said two-thirds of the children the Levy Center has served have transitioned to typical classrooms at local schools.
One who is looking forward to that day is Katelyn Becca of Bridgeport.
Her son, Mathew, who is 4, was nonverbal, had minimal eye contact and no meaningful interaction with anyone two years ago.
“He was almost robotic, which is typical of autism,” she said. He was diagnosed with mild autism in February 2013 and began receiving therapy at Augusta Levy in October that year.
“I remember when I first went there for the tour, I almost wanted to cry I felt so happy,” she said. “For the first time, I was surrounded by people who understood why he couldn’t talk, why my 2-year-old couldn’t tell you his name. It was so welcoming.”
After several months, she began noticing changes. He pointed to the things he wanted. He began to speak, and then form sentences. He interacted more and expressed enjoyment. “He basically would involve us in his life more. He just opened up,” Becca said.
Mathew will graduate from Augusta Levy in August and start special needs preschool at Bellaire Elementary School in September, after which Becca is hopeful he will be able to attend kindergarten at Bridgeport with his typical peers.
“If you were to see him now, you would never even believe two years ago he didn’t speak.”
Although every child with autism is different, with different limitations and varying needs, dozens of Augusta Levy families have similar stories to Becca’s. The key is the individual programs that are developed for each child and the one-on-one therapy for at least 30 hours a week. The parents also are brought in for personal workshops to learn how they can work with their children at home.
Mom Lynette Sterling of Rayland sings Augusta Levy’s praises. She has noticed huge strides in 5-year-old Isaiah’s language skills.
“He sings all the time. He sings his ABCs, and we put nursery rhymes on YouTube, and he sings along. And just the other day, he put a couple sentences together. He would say, ‘Come here, Mama.’ But he said, ‘Come here. Play with me trains, Mama.’ Oh! He put all that together! … Anything new that happens with him, it’s a big production,” Sterling said.
“They are so wonderful there. Each one of them could be like my sister or brother or you name it. They are a wonderful, wonderful group,” Sterling said of the Augusta Levy staff.
Leading With Love
Augusta Levy clinical director Angie Wood said Shapell’s personal concern for the staff is one reason the center thrives.
Wood has been with the center almost since the beginning, as a college intern in 2007, when the center was still at Zion and there were five children.
She helped “build the school” every Monday morning and tear it down every Friday afternoon so the church could use it for Sunday school.
At the new center, she helped scrape tile and paint walls. She was hired full time as a therapist after graduating from Ohio University and then became a case manager a few years later.
In 2013, after completing a master’s degree in early intervention with an autism specialization from the University of Pittsburgh, she was made clinical director. The same year, she became a mom.
“It’s a lot, but I love it,” she said. “Kathy has really invested a lot in me. I bounce things off her multiple times every day. She’s a great mentor,” Wood said, adding when she was struggling with working full time and being a mom, Shapell connected her with a leadership coach who has “helped balance my life so I’m not so exhausted that I can’t spend time with my kid.”
Wood said Shapell goes above and beyond like that for every employee.
“She really tries to find ways to help them grow. Not only are we trying to help these kids be the best they can, but we also are trying to serve the staff so they can help better serve the kids,” Wood said.
“There are so many needs in the autism community, and I just want to be part of helping serve them in any way possible,” Wood said. “I always say I’m going to be at the Levy Center till I’m 80.”
The Levy Center’s impact goes beyond the dozens of families it has served in the Ohio Valley. As the only site in the country certified by the Lovaas Institute in specific training and programming areas, the center has been tapped to help develop other programs in the state, including the one at the Klingberg Center at West Virginia University and one in Hurricane.
“Our ongoing collaboration with the Lovaas Institute includes continued staff training, child-centered programming and site visits from them,” Shapell said.
“However, we now have board-certified behavior analysts on staff who have the expertise, along with the Lovaas certification, to offer our children the very best services available.”
Shapell also worked hard to advocate for families in Charleston when the Autism Insurance Law was being considered.
“We took families down (to Charleston) several times to educate legislators on the need,” Shapell said. “Forty-one states have passed the legislation so far. We were really proud of our state. West Virginia was the 25th state to sign.”
As a testament to the center’s impact, Gov. Earl Ray Tomblin signed both the 2011 version and the 2012 update at the center.