3-year-old caught in middle of a question of who pays for her care
Little girl can't swallow, but doesn't qualify for help from school district
Dan Bates / The Herald
At the family home in west Marysville, Zoe Hostetter, 3, hangs out with her dad, Brad, who serves on the USS Abraham Lincoln at Naval Station Everett.
Dan Bates / The Herald
Nicole Hostetter talks with Zoe after playing a game with her downstairs at the family home in west Marysville.
The problem is that, without assistance, Zoe Hostetter can't eat or drink, or even swallow her own saliva very well.
She proves it by pulling up her pink T-shirt to show the feeding "button" on her little belly. A big syringe filled with blended food is inserted into the button several times a day.
Her doctors call Zoe's condition an unspecified neurological and muscular disorder. The problems are "unspecified" because nobody has figured out why Zoe can't swallow, why she tires easily or why she is small for her age. For now, what they do know is that Zoe is deficient in immunoglobulin A, an antibody found in saliva. A home health care nurse helps the little girl five days a week.
Until her September birthday, Zoe had been enrolled in a special program for very young children with developmental delays at Sherwood Community Services in Lake Stevens. Among other things, she received help learning how to swallow as part of a speech and occupational therapy program funded by the state Department of Social and Health Services.
In August, a state administrative law judge ruled that Zoe doesn't meet the requirements for an individualized education program or special education funding for preschool from the Lakewood School District. She is a bright child and her physical handicap doesn't impair her ability to learn, the judge said.
The ruling shocked and angered her parents, Navy Petty Officer 1st Class Brad Hostetter and his wife, Nicole. If there were time and money they would appeal.
As it is, they have a heavy load.
Brad Hostetter, 38, serves on the aircraft carrier USS Abraham Lincoln and Nicole Hostetter, 27, works in Lynnwood at a care facility for people with severe autism. The Hostetters have three other elementary school-age children and the eldest is autistic.
"We just want people to be aware of the issues we face," Nicole Hostetter said. "We think Zoe is being denied services. We know there are huge cuts to education in this state, but this should not effect our vulnerable child. Zoe should be allowed to attend preschool like any other child."
The problem is that with Zoe's inability to swallow, no preschool wants the liability issues without special education funding for a teacher's assistant, Nicole Hostetter said. In addition, the company that provides the family's health insurance is scheduled in six months to stop paying for Zoe's home nursing care and doesn't cover all the specialists she sees. The Hostetters already pay out of pocket, but can't afford to foot the entire bill for the care Zoe receives now.
"We're a walking disaster for the Navy's insurance carrier," Brad Hostetter said.
Nicole Hostetter tries to keep the news of family troubles to a minimum when her husband is deployed.
"There are days when Brad is gone on the Lincoln that are very hard," Nicole Hostetter said. "We have friends here, a lot people in the school district support us, and our church is good. But all our extended family live back East. I try not to overload Brad because he has a lot of safety responsibility on the ship. This has had a huge strain on our marriage and on our other children."
Joyce Scott, Lakewood School District's director of special services, cited privacy issues and declined to comment specifically about the Hostetters' request for help from the district.
"I feel for families in this position, but there are specific parameters that determine eligibility for funding," Scott said. "If a preschool child isn't eligible for an individualized education program, we can't serve them. More and more families are on their own as social service programs are cut."
If a child needs a different preschool curriculum, that child can receive special help, said David Hokit, the school district's lawyer. However, if a child is capable of learning what is taught, special education funding is not available.
"If a child has asthma, that disability could impact their education, but it would not necessarily require special education," Hokit said.
Nicole Hostetter argues that her daughter's health problems and the resulting safety issues would cause problems academically. For example, Zoe could choke to death if she were to eat a cookie or drink apple juice served in a classroom, she said.
"How is a child supposed to make progress if she is dealing with medical issues?" Hostetter said. "She has the swallow of an 80-year-old stroke victim!"
Carol Loup, an Everett speech therapist, agrees. Loup has working with Zoe on swallowing skills since Zoe was 9 months old.
"We work on Zoe's posture and the range of motion of her tongue, jaw and cheeks," Loup said. "Her swallow is unsafe, and eating is part of what happens at school. Socialization is taught through food. If thin liquids get into her lungs, she could have pulmonary problems."
The Hostetters plan to keep trying to find a way to help their little girl progress in life.
"We hope that someday Zoe learns to swallow," Nicole Hostetter said. "She is so smart and she wants to do things other kids do."
Gale Fiege: 425-339-3427; firstname.lastname@example.org.