September 29, 1996 in Nation/World

Disabled Moving Into Houses, Hearts Short Life Of Glenda Cornelius Illustrates Turmoil Of Home Care

By The Spokesman-Review
 

She was in the bathtub when it happened. It was her favorite place. She’d play in the warm water for hours.

She loved baby rattles, too. Anything that rattled. Sometimes she’d visit the neighbor’s garage to play with the suitcase handles, just to hear the noises.

She lived in a mobile home surrounded by a moonscape of windy wheat fields where she could run as far as her stubby legs would take her.

But Glenda Jewel Cornelius was a 22-year-old, not a toddler. And the severely retarded woman was lying in 6 inches of soothing bath water when it happened.

Diane Howe, the woman she called “Mamamama,” went to get a drink of water and left her alone in the tub - for just a moment.

During that span, Glenda had an epileptic seizure and inhaled water. When Howe returned, Glenda was in the fetal position, her head submerged.

“I lifted her out of the water,” Howe says, acting the scene out, crying at the memory. “I gave her CPR. I couldn’t feel her pulse. I was shaking so hard. I was screaming, just screaming.”

Glenda’s drowning last month went almost unnoticed outside Almira, but her life and death hint at the bliss and misery Washington residents face as they increasingly care for mentally disabled people in their homes.

Howe is one of hundreds of Eastern Washington residents the state now pays to care for mentally disabled people.

Just six years ago, most children and adults, suffering from everything from retardation to head injuries, lived in state-run institutions.

Now fewer than 6 percent of them get such care. Most live in family settings, in neighborhoods, in the home next door.

Interlake School once cared for 300 disabled residents inside a Medical Lake building. Now it’s closed.

Lakeland Village once had 1,500 residents in the same area. Now it has 286.

More than 3,300 people now qualify for the state-run, in-home care program in Eastern Washington.

Oversight of this Medicaid program is minimal, state officials admit.

But when something goes seriously wrong, scrutiny comes quickly.

Howe had cared for mentally disabled people for more than two decades when Glenda turned over in the bathtub earlier this month.

The most recent state inspection found no flaws with her care. The Lincoln County Sheriff’s Department and the town marshal never heard complaints about her.

But after Glenda was rushed from Almira to Spokane in a helicopter ambulance, rumors ricocheted around this talkative town.

Howe kept Glenda locked in her room, the rumors asserted. She didn’t let her go outside. She wailed at night….

The state Adult Protective Services passed a complaint to the sheriff’s department, and Detective Jerry Lane drove out U.S. Highway 2 to investigate.

A week later, Lane concluded Glenda’s death was an accidental drowning and not the result of poor care.

Glenda was in Howe’s hands for 11 years as part of the first wave of people to leave institutions and enter home care.

Their relationship started at the old Moran Group Home in Spokane where Howe worked. She took Glenda home with her because she thought the child needed more intensive care.

Three years later, as the state closed the Moran home, Howe also took Shane Anderson into her Freya Street residence.

Both children were disabled for life. Their records are confidential, but a source says Shane’s mother whacked him so hard with a telephone it damaged his brain; and Glenda’s mother drank too much alcohol while pregnant.

“For her family, Glenda was hell, and I understand that,” Howe says. “But for me, she was a little flower growing. She’d look up at you with this big smile and she’d kiss you on the nose.”

Howe lived with Glenda and Shane in Spokane until five years ago when she decided to buy some peace and moved to quiet Almira.

She bought a mobile home on a back-road lot in this tiny town of 275 people, 80 miles west of Spokane. Shane and Glenda got along like siblings and slept in the two bedrooms next to Howe’s.

Glenda was a stocky 4 feet 8 inches tall with a stooped gait. She was incontinent and required a diaper. She often bit herself.

At night, she’d jump on her bed next to the big poster of ocean waves. She’d grunt and moan in the dark, or play with the rattles and other baby toys in a box near the bed. She was noisy, but knew few words. If she said, “S,up!” that meant Shane was supposed to shut up. If she yelled “eh!” it was time to eat.

“Glenda was developmentally disabled, but she was very opinionated,” Howe says, laughing. “She would tell us it was time to eat, time to sleep. She wouldn’t say it so that you’d understand it, but she was in charge.”

Shane comprehends no more than Glenda did, but he mimics perfectly. “Be all you can be in the Army,” he said one night.

Susan Baier lives next door. “They scared my kids at first,” she says of Shane and Glenda. “But they were harmless. I think Diane does a good job.”

A full-time job

Glenda had her very own special-education class at Almira School. She liked to visit the kindergarten class with her teacher.

“The little kids were a little afraid of her,” says Grace Dyson, a special education aide the school hired to deal with Glenda.

Dyson says Glenda greeted her by grunting and moving her mouth up and down. “When she got excited, she’d let you know.”

Glenda had a few seizures at school. “We had to just sit down for a while. It would change her whole” demeanor, Dyson says. “She’d take your hand and put it on her shoulder and that meant she wanted you to rub her back.”

Dyson says she believes Glenda taught people about the disabled. “Almira is a small community. It hasn’t had much exposure to (people like her.) I think she did touch some lives.”

Dyson heard some rumors after Glenda’s death, but says she believes Glenda was in loving hands. “Certainly Diane Howe cared a great deal about her. She was a special person to her.”

Dyson also says, as much as she enjoys working work with the disabled, she sees Howe’s full-time responsibilities as daunting.

“What a job. I would not trade places. That’s full-time child care in an adult’s body.”

Despite what happened, Howe insists residential homes are superior to “big buildings in the woods” for the disabled. “They need a family,” she says. “That’s all these kids really needed.”

The debate between institution and in-home advocates will continue. But when it comes to price, there’s little argument.

It costs taxpayers about $300 a day, $109,500 a year to care for a disabled patient in a state institution. In-home care costs about $20 a day, $7,300 a year.

Home care is far more demanding than many people expect, social workers say, noting the Medicaid checks from the state often don’t cover costs.

The state paid Howe $563 a month to take care of Glenda, another $862 to care for Shane.

“Money is not the reason people do this, believe me,” Howe says. She points out her income was less than $2 an hour for the around-the-clock care she gave Glenda and Shane.

Marybeth Poch, director of field services for the regional state Department of Developmental Disabilities, says the agency mindset has shifted in recent years.

“People were looked at in terms of their disabilities instead of what their abilities were,” she says. “We’re now discovering sometimes these people really do have gifts.”

Poch says she considers Howe a good provider.

Detective Lane also concluded that it wasn’t a care problem that led to Glenda’s death. In fact, he said, he suspects it happened just as Howe said it did.

On Sept. 12, Howe says she was waiting for Glenda’s Tegretol - an anti-convulsive drug that helped prevent seizures - to arrive at the Grand Coulee drug store. The prescription was two days late.

Glenda soiled herself, so Howe says she ran a bath to clean her and help her relax before they drove to the drug store. Then Howe went to get a drink of water.

“I don’t feel guilty,” Howe says, “but I wish I hadn’t left that damn bathroom.”

Howe heard the rumors about her care, and dismisses them as nonsense. She says people often don’t understand disabled people, or what it takes to care for them.

She also points out she has no locks on any bedroom doors, and she didn’t let Glenda out in the heat because of her health conditions and medication.

“I haven’t hardly left this house in five years without Glenda with me.” Howe starts to cry again. “I couldn’t leave her for an hour.”

Graduation party

During her last year at Almira School, in 1995, some students threw Glenda a Valentine’s Day party.

But she could never fit in.

She graduated, because she turned 21 and was too old to stay in school, but she wasn’t allowed to attend the ceremony.

“They were afraid she’d make too much noise,” Howe says. “So we went and got her some ice cream. That was her graduation party.”

Howe says some of her favorite moments with Glenda were at the Colville Tribe’s powwows in nearby Nespelem.

Indians were more accepting than white people, she says. Instead of treating Glenda like a disease, they treated her like a gift from God, and considered it a blessing just to be touched by her.

Howe now plays the radio constantly. It was never quiet with Glenda around. She was always making noises. Howe can’t bear silence.

“The only thing that keeps me going right now is that I know that wherever Glenda is at she’s not handicapped anymore,” Howe says.

“And she’s freer than whatever we’ve known her for on this earth. If I didn’t think that, I couldn’t get up in the morning.” Howe shudders. “Glenda was a free soul, believe me.”

, DataTimes ILLUSTRATION: Color Photo


Thoughts and opinions on this story? Click here to comment >>

Get stories like this in a free daily email