For parents, Camp Prov stands out amid a broken disability system

EVERETT — After Amanda Zamara dropped her son off at Camp Prov for the first time in 2019, she spent the day nearby, glued to her phone. But the call she expected never came.

Archer, 3, had just been diagnosed with autism, and was “a handful,” his mother said. He was a runner. He had a hard time using his words, and would scream to communicate his needs. Zamara assumed he would be too much for the counselors at Camp Prov, an annual summer camp for kids with special needs hosted by Providence Regional Medical Center Everett.

Instead, when Zamara arrived at Forest Park in Everett a few hours later to pick up Archer, a counselor met her with messy hair, disheveled clothes — and a huge smile.

“There are so many things that children with disabilities are excluded from in life,” Zamara said. “Every child deserves that small slice of normalcy.”

Every March, parents like Zamara drop what they’re doing to register their kids for a week at Camp Prov, one of the few day programs for special needs kids in Snohomish County. From July 8 through Aug. 9, Forest Park becomes a place where kids age 2-12 with disabilities and their siblings can have fun on their own terms, with the help of trained counselors. And it’s one of the few times each year their parents can drop them off without worry.

“Each child has to be treated as an individual,” said Christie Tipton, former manager of the Providence Everett Children’s Center and Camp Prov. “Whether they have cerebral palsy, or Down syndrome, or epilepsy or spinal bifida. The mainstream for Camp Prov is finding the strengths the child has, and building on those.”

At the park, campers and their counselors participate in arts and crafts, sensory play, nature walks, storytelling, live music and dance. This year, AquaSox players and a therapy dog visited. Aside from more than 300 trained volunteers and 22 unit leaders, the camp also staffs an educator, activities specialist, speech language pathologist, occupational and physical therapist and a family resources coordinator.

Megan Pfohl has served at the camp for eight years, first as a Jackson High School student volunteer and now as a therapist from the Children’s Center. Her favorite memories are when campers “blossomed” after having the space to be themselves, she said, and making lifelong friends with other Camp Prov staff.

A Providence early intervention educator planted the first seeds of Camp Prov in 1996, when she hosted four children with disabilities for playdates in her backyard. Soon after, Tipton said, the Providence General Children’s Association provided about $15,000 to create a formal camp and relocate to Forest Park. The association has been Camp Prov’s main financial backer since.

Camp Prov saw a dip in attendance due to the COVID-19 pandemic, but has since reached capacity at 350 campers. Providence charges $130 per kid, a fraction of what it costs to put on the camp, said Shanna Van Horn, who now manages the Children’s Center and Camp Prov. If families can’t pay, Providence offers scholarships. Camp Prov has yet to turn away a family because of finances, Van Horn said.

Since that first summer, Archer, now 8, and Zamara’s daughter Raley, 5, have been mainstays at the camp. Archer is autistic and has attention-deficit/hyperactivity disorder, or ADHD, while Raley is also autistic and has a sensory processing disorder.

“That one week every year is the most important thing in the world to my kids,” Zamara said.

‘I wouldn’t change my kids for the world’

It’s otherwise been nearly impossible for Zamara to find child care.

She doesn’t have family nearby to help. Babysitters for kids with disabilities charge at least $30 an hour, she said. Day cares, summer camps and other recreational activities often don’t have the staff needed for Archer and Raley. Aside from Camp Prov, therapy is the only place she has regularly been able to leave her kids for more than an hour.

“Parents who have a child with special needs don’t have a parent guidebook,” said Tipton, who also has a child with disabilities. “And we have a horrible, horrible system for supporting a child with special needs in our community.”

In Washington, early intervention support for kids with disabilities — connections to an educator, therapist and family resource coordinator — mostly go away after age 3. Families can then seek out a social worker, Tipton said, but their caseloads can be up to 250 children. Zamara said it took her family several years of fighting with the state, and stacks of paperwork, to get disability support.

Schools are responsible to replace early intervention help after age 3, Tipton said. But in reality, schools often don’t have the training or resources. Last year, Zamara pulled her kids out of Marysville schools because she felt the district was too financially strapped and understaffed to accommodate their needs. She was planning on going back to work, she said, but made the “difficult decision” to homeschool.

Providence’s Children Center and Autism Center have tried to step into the fold, Tipton said, and offer services including therapy and home visits until age 18. The hospital also provides one of the only early childhood development programs that accepts Apple Health.

“I think we’ve done a good job,” Tipton said. “But there’s only so much we can do.”

Tipton said it’s the same problem for high school graduates with disabilities. State transition services reach kids age 18-21, she said, but after that, “boom, there’s nothing.” Tipton pointed to California’s Lanterman Act as an example for Washington to improve and expand its disability services. The law provided a stronger bridge of services for people with disabilities so they could lead more independent lives.

The Arc of Snohomish County, a local family-led disability advocacy group, has been a great source of support and resources, Zamara said. She also took the state’s Parent Institute of Engagement course, a yearlong program that trains parents to advocate for their kids after they age out of early intervention services.

Earlier this year, Zamara joined 120 other parents to advocate for the Autism Cares bill in Washington, D.C. The latest version of the bill would improve wage reimbursements and training for disability caregivers, who are difficult to hire.

“Since my oldest was diagnosed, I have been advocating, because it’s the only way I can sleep at night,” Zamara said. “I wouldn’t change my kids for the world. So I feel like I have to change the world for them.”

Sydney Jackson: 425-339-3430; sydney.jackson@heraldnet.com; Twitter: @_sydneyajackson.