Abused quadriplegic creates program to train caregivers

Guschani the Plain Dealer

She’s also lobbying for a licensing law
MARGARET BERNSTEIN Plain Dealer Reporter

It seemed things couldn’t get worse for Edna Sutton, paralyzed in 1988 when an angry ex-lover’s punch knocked her through a second-story window.
But they did. She said that repeatedly during the next 22 years, she fell victim to a startling phenomenon — that disabled people, and women in particular, are at higher risk for violence and crime, sometimes by the very people sent to their homes to care for them.

Sutton, a quadriplegic who lives alone, said many of her health care aides neglected, abused orstole from her.

“I’ve been raped. I’ve been robbed,” says Sutton, 47, of Cleveland.
“I’ve had a caregiver who left me in the bed all day, no food, no bath or anything.”

Sutton reported the incidents to the agencies that supplied the aides, only to find herself labeled a constant complainer. Several agencies dumped her, giving her 30 days to find a new home health provider.

Digging further, she found troubling gaps in how Ohio’s home health care aides are regulated.
Sutton has lobbied elected officials for change and helped get a House bill introduced.
Slowly, she also carved a role for herself.

Next week she launches Compassions Training and Awareness Center to show health care aides how to do their work properly and with sensitivity.

Sutton hopes to befriend, not belittle, the aides, who she believes are often young single mothers living paycheck to paycheck.

She has an arsenal of statistics ready to share with them. People with physical, mental or emotional disabilities are \Vi times more likely to be crime victims than those without disabilities, according to U.S. Department of Justice figures released in 2009. Most at risk are disabled women, victimized at rates almost twice those for other females.

The report also found that disabled women were more likely to be victimized by someone who is not a close relative or friend. While 27 percent of violent crimes against women without disabilities are committed by a current or former mate, the number shrinks to 16 percent of females with a disability.

It’s impossible to know what percentage of such crimes happen at the hands of home health care aides, because of limited federal and statewide record-keeping.

“There are very many good home health aides out there,” said Terry Fries-Maloy, a care coordinator at Hickman & Lowder, a Cleveland law firm. “Sometimes it’s just a misunderstanding between what the client wants and what the aide thinks the client wants.”

Ohio neither licenses nor registers home health care aides, so there’s no central place where consumers can turn to report substandard care.

Figures collected by the Cuyahoga County Board of Developmental Disabilities give a glimpse of the problem but aren’t comprehensive — the board handles only certain types of disabilities and only for people disabled by age 22.

The state Department of Health keeps track of another small slice of complaints, those filed against home health care agencies certified by Medicare.

But many agencies supplying home health care aides rely on private-pay clients, and these aren’t required to adhere to any standards.

Dissatisfied patients can always complain directly to the agency supplying the aide — yet many don’t, Sutton said. That’s because the agency can slap them with the 30-day notice and tell them to find another provider.

State Rep. Barbara Boyd, Democrat of Cleveland Heights, said she hadn’t realized how lax Ohio was in overseeing the growing home health aide industry until she met Sutton. Boyd co-authored a bill this year requiring agencies that provide health aides to be licensed through the Ohio Department of Health. No hearings on the bill haye been held yet.

“She opened up my eyes to the inadequacies,” Boyd said of Sutton.

The bill is not the only one of Button’s dreams that is coming to fruition. Next week, classes begin at the nonprofit Compassions, inside the Fairhill Partners com- plex in the Larchmere area.

To get this far, it has taken years of struggle — catching the bus to meet with lawmakers, taking a business class, applying for tax-exempt status, being turned down for grants. But successes are streaming in: $10,000 grants from the Christopher and Dana Reeve Foundation and the Mount Sinai Health Care Foundation, and smaller donations from KeyBank, the United Black Fund and Alpha Kappa Alpha Sorority.

Through word of mouth, 30 students have heard about her eight-week sessions and signed up for the $250 program. She intends to offer standard health aide training and go beyond, teaching students how to style their patients’ hair, fix meals, clean their home and do laundry.

Her own story will be part of the curriculum.

At age 24, Sutton tried to break up with a boyfriend when she found out he was married. She said he told her that he would see her dead first.

In her apartment near Cuyahoga Community College’s Metropolitan campus, he hit her so hard that Sutton plunged backward and through a window, breaking her neck.

Sutton said she became an activist when she spent the next few years in a Mansfield nursing home and saw residents being served spoiled food and sitting in their own waste. She later lived on her own in Mansfield and got a television news crew to do an investigative report in 1996 when an aide failed to get her up or feed or bathe her and then forged her signature on a form.

She moved back to Cleveland, where the abuse from a string of aides continued. In 2003, she told police she awoke from a drugged sleep to find her purse and jewelry missing and an unexplained wetness between her legs. Police conducted a rape investigation and determined she had vaginal bleeding. Sutton still doesn’t know what happened, although she believes an aide let men into her home. No one was arrested.

Many disabled people living at home choose not to report such crimes, Sutton said, because they fear being institutionalized or further abused.

Yet Sutton understands the plight of the home health aides. Many have been low-income single mothers with troubles of their own,  she said.

Part of her goal with Compassions is to minister to their souls. Through introspective exercises and honest conversation, she hopes to spark the young women to recognize their worth.

“So many young girls are being abused. They’re letting men just take them and use them,” Sutton said.

She can relate. She had three children herself by age 24, although they were scattered to relatives after she was paralyzed.

In recent years, Sutton has worked hard to assemble a team of personal caregivers whom she trusts. They have helped spread the word about her program.

The young women, all single mothers, say Sutton has a means of sharing wisdom and blunt talk with them, in a way they haven’t heard before.

“I wish I had met her a lot earlier,” said Sharmikka Cooper, 27, Button’s evening caregiver. “She’s like a mother almost.”

Cooper, a mother of three, said Button’s classes will be “like a wake-up call to young women.”
“I think it’s needed, so she can show them how people are supposed to be treated,” Cooper said.

 

 


Click here to make a donation to Compassions Training