Under Joya, serving same Guilds’ School way

A well-known regional center has held a hefty title for decades: Spokane Guilds’ School & Neuromuscular Center. A women’s guild started the nonprofit to improve the lives of children with developmental disabilities.

While the mission remains, much has changed, including the name. You’ll see the newly unveiled moniker, Joya Child & Family Development, during the annual Penny Drive on April 27.

Coinciding with expansion plans for a new facility, the name Joya is purposeful on many levels, said executive director Dick Boysen. Partly, it’s to help remove confusion caused by the old name. And Joya, with family in the title, better reflects comprehensive services for young kids and hope for parents, he said.

“We’re not really a school; we see children birth to 3, and then the ‘neuromuscular’ term was really frightening to families,” said Boysen, at the helm for more than 40 years. Some people thought the center only served wheelchair-bound kids, or that children were physically in a school setting.

“So the fact that we’re in the early midst of a capital campaign we thought, well the timing is right to make the name change as we move into the new facility. Parents tell us that we do an awful lot for them, in addition to what we do for their children.”

After initial assessments, most services are provided in a family’s home by Joya staff, including therapy services and support ranging from physical and occupational therapy to speech experts.

Its therapists along with special education teachers give parents tips so they can work in the home with their kids to reach developmental milestones, before school starts, Boysen said.

Children do go into the center about three days a week for a program called Preschool Plus, involving small groups and peer activities. While there, toddlers are pulled out for some individual therapy sessions on site.

With an eye toward expansion, the nonprofit in 2017 bought the former St. Joseph Family Center. The plan is to move there by fall 2021 from its Garland Avenue site, and the space will allow enrollment to grow from 300 children a year to nearly 600, Boysen said.

Joya also has launched a $18.5 million capital campaign, hoping to secure $1 million of that from the state Legislature.

Boysen added that being in the University District will open up potential research projects combining Joya’s work with studies done by nearby universities’ health science programs.

Today, Joya supports infants and young children who have a broad range of conditions affecting their development, Boysen said. Some include chromosomal syndromes, hearing impairments, visual problems, autism spectrum, Shaken Baby Syndrome and drug exposure in utero.

Deer Park residents Hagen Burzic and her husband, Parker, are among the families receiving its services. Their daughter Harper, 28 months old, is this year’s Penny Drive poster child.

Harper has what’s called DiGeorge syndrome, or officially 22q11.2 deletion, with a wide spectrum of possible health issues. For Harper, it has caused heart issues, some hearing and vision loss, and complications with her ability to swallow. She’s had two open-heart surgeries.

“Because of Harper’s diagnosis, we knew she’d be behind in reaching milestones, so she was seen at 3 month for her first evaluation,” Burzic said. “She received in-home services from 3 months to 18 month old.”

That’s included a physical therapist, an occupational therapist, a speech and feeding therapist and also a special education teacher. Joya staff has helped Harper and her parents learn sign language, and they’re working on developing her speech.

The parents also received help working with Harper on strengthening her core body muscles, weakened during long hospital stays. A major step lately is helping their daughter, who has a feeding tube, learn how to eat food through her mouth.

“Harper didn’t officially eat anything by the mouth until six months ago,” Burzic said. “We had to teach her even how to swallow food.”

Joya leaders say that primary care physicians today, in following screening protocols, are identifying more children with developmental delays. For many families, that diagnosis can be devastating, said Teresa Conway, Joya capital campaign manager.

Conway discovered the Spokane Guilds’ School in 2010 for her son James, who had multiple congenital abnormalities.

“My son was born with both a chromosomal abnormality as well as a brain defect,” she said. “We thought he was born OK, so for his first three months, we were just happy new parents.”

But he developed pneumonia and was hospitalized, when doctors gave them the diagnosis.

“When we were handed this piece of paper with this diagnosis, our world came crashing down. It’s a really dark place for parents. You’re handed something that you don’t understand. It’s very scary.”

Thousands of stories like hers are heard by Joya staff, she said. When she first entered Guilds’ School, the Conway family quickly encountered optimism.

“We were greeted by people who were happy to see our child and to see us,” she said. “You need someone to give you a sense of hope, to give you confidence as a parent. We had a child with an oxygen tube and a feeding tube. I’m thinking, what can we possibly do with him? He can’t even move.”

But therapists used methods to wake up his muscles and send signals to the brain to help him progress, she said. They showed his parents what they could do and connected them to other services. James, now 8, walks and comprehends “a ton” while in special education.

However, Conway said nearly half of the children served by Joya have a minor impairment, but the early intervention work proves crucial.

“It could just be for a speech impediment, and because of early intervention at that critical time of brain development, they catch up,” she said. “When they hit preschool, they’re ready to go.”

The center estimates that 47% of the children who received its services and left in the past fiscal year reached their age-appropriate milestones. Other children by age 3 reach enough milestones that they’re better prepared before entering a school district’s special education program.

About 70% of Joya families are Medicaid-eligible. Conway said Joya offers a peace of mind for parents worried about affordability.

“When you come in for services, if you can’t afford to pay or when insurance runs out, you don’t ever see a bill,” she said. “You don’t have to worry, and it’s not a stress of another bill.”

The center raises 40% of its operating budget through special event fundraising, its foundation and private donors. The Penny Drive funds go to the center’s foundation, which invests the money. Each year, a percentage of foundation funds go back to the school, Boysen said.

Conway said the old name, and history, of Spokane Guilds’ School isn’t going to disappear, and people will still hear it at times. An original guilds group was started by nine women in 1956 as a service club, with that mission to improve the lives of children with developmental disabilities.

The group made and distributed Easter baskets and Christmas presents for children at Lakeland Village, among other projects. Later, they formed alliances with other guilds in Spokane with similar goals for disabled kids – Helping Hands, Angels in Disguise and Shamrock.

Eventually, the groups joined forces toward forming a preschool nursery for children with developmental disabilities, and the first Spokane Guilds’ School class launched Sept. 29, 1960.