Fight goes on for the cause of disabled
Nancy Nettleton was born in 1959, long before people talked much about rights for those with developmental disabilities. She was deemed a “retarded” child, the label used back then.
It was a label her mother, Delores Nettleton, never shied away from. Nancy has lived at Lakeland Village since she was 13 years old. She is now 45. One day Nancy had nonstop seizures for 18 hours and Delores realized that she and her husband, William, could no longer care for Nancy at their North Side Spokane home.
Delores, 74, is gentle-mannered but not shy. She has no time for timidity. She is on the minority side of a societal trend that says people with disabilities should live in communities, not institutions. But for some adults with developmental disabilities institutions are best, Delores believes.
She and other parent-activists are happy this week. The legislative session in Olympia is drawing to a close, and funding for Fircrest School, a residential facility on Washington state’s West Side, was preserved. Proposed budgets in years past have called for the closure of Fircrest.
Fircrest’s fate will be the eventual fate of the other four state institutions for the developmentally disabled, the activists believe. “We are concerned about the domino effect,” Delores said.
Delores and I drove out to Lakeland Village together last week. It’s in Medical Lake, on a sprawling campus that harkens to the days when those deemed “different” lived far from the mainstream.
About 250 adult residents live here now at an average cost of $424 per person per day, paid for with state and federal funds. They live in cottages, neat and clean cottages, with staff who seem quite devoted; Lakeland employs 600 full-time and part-time employees.
We met up with Nancy, who was eating in the cafeteria. “There’s my Mom!” she shouted.
Delores hugged her. Nancy had spent the morning in the print shop, folding, stapling, collating and labeling forms. In other work rooms, residents folded rags and cut Velcro strips for camping equipment. Others did ceramics and bead work; a few built benches and tables.
Some residents who cannot move their limbs spent time in a room with a staff-built waterfall, chirping birds, flashing lights and bubble machines. In this room, their senses are stimulated. It is work of a different order.
Dignity is the watchword at Lakeland, and if you haven’t visited in years, go on a tour sometime. Delores can arrange it. As secretary of Lakeland Village Associates, she has organized tours for most of the state legislators representing Eastern Washington. She’s hoping Gov. Chris Gregoire will visit soon.
After lunch, we visited Nancy in her cottage named Sunrise. She lives there with 15 others. A soap opera played on the big screen TV, while a resident washed dishes in a kitchen painted red. The residents wore jeans, sweat pants and running shoes.
Steve Kellen, assistant superintendent at Lakeland Village, says that 50 percent of the residents see family members on a regular basis. I am surprised it is that low. He tells me I should be surprised that the percentage is that high. The more severe the disability, the less the family is usually involved. He says this without judgment.
Nancy visits her mother’s home every other weekend and stays an extended time during holidays.
“By the fourth day, she’s at odds,” Delores, now a widow, said. “So when the bus pulls up, she’s ready to go.”
Delores and the other parent-activists know their cause received a budget reprieve this legislative session, but each year, this issue grows more contentious. They are often at odds with advocates who have a powerful lobby against institutionalization for those with disabilities.
“I know there is another side, but I don’t want to let our side go unnoticed,” Delores told me at the end of our tour. “Unless you have lived here or worked here year after year, you don’t have a clue.”