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Clients and caretakers: Lives intertwined in the workplace

Forget a cordial exit interview, or two weeks' written notice. The woman whom Beatrice Sylla, 63, a disabled nurse from Olney, hired as a caregiver quit suddenly, leaving Sylla at 30th Street Station, in her wheelchair, her oxygen tank dangerously low.

Tonette Moore instructs a class that includes James Phillips and his caregiving girlfriend, Edna Stuart. The nonprofit Liberty Resources Inc. organizes the course.
Tonette Moore instructs a class that includes James Phillips and his caregiving girlfriend, Edna Stuart. The nonprofit Liberty Resources Inc. organizes the course.Read more

Forget a cordial exit interview, or two weeks' written notice.

The woman whom Beatrice Sylla, 63, a disabled nurse from Olney, hired as a caregiver quit suddenly, leaving Sylla at 30th Street Station, in her wheelchair, her oxygen tank dangerously low.

"She said, 'I quit,' and walked away. It was horrible."

Interesting power dynamic.

On the one hand, disabled individuals who hire attendants are bosses. They sign the paychecks and have the right to hire and fire. On the other hand, they often physically depend on their employees for the basic of elements of human survival - food, oxygen, bathing, toileting.

Twice weekly, a dozen disabled people - known as consumers - and their caregivers discuss the issues in a class organized by Liberty Resources Inc., a nonprofit agency that helps disabled people become more independent.

"You have to learn to advocate for yourself," Sylla told the group yesterday as her attendant, Deyen Jariah, 26, of Northeast Philadelphia, sat nearby.

"To suddenly become an employer and to hire someone who becomes primary caregiver, it causes a lot of stresses," said Linda Dezenski, Liberty's chief operating officer, who helped develop the class.

The disabled need to learn how to act like bosses and how to insist on accountability, Dezenski said. And many times, the attendants, who are often inexperienced and earn less than $9 an hour, need to learn about the physical and psychological effects of being disabled.

"You have to sit down and explain what is bothering you," Sylla said yesterday. "You can't have a chip on your shoulder."

This is the second set of classes set up by Liberty. They come as some health-care experts are advocating moving the disabled out of nursing homes and into independent living.

In many cases, caregivers are family members, and sometimes they are paid with the same Medicaid money that funded the nursing home.

These days, caregiver Dwayne Hall finds himself in the dual position of husband and employee.

"I have to know how to stay within the fine line of her as a consumer," he said. His wife, Annette Hall, nodded. She has a neurological disorder that often leaves her weak. "Some of the things she demands as a consumer I may have problems with as a husband."

In theory, Teri Lombardo, an attendant from South Philadelphia, understands that her client, a brain-damaged man who was unable to attend yesterday's class, has rights as an employer.

But it gets aggravating to hear him say, day in and day out, "I can fire you," Lombardo related.

Everyone laughed in sympathy, but instructor Tonette Moore interrupted to make a point. "As the consumer, he needed that," she said, "because so many have been so beaten down."

James Phillips, 49, of Southwest Philadelphia, understands.

In 2005, he lost all 10 fingers to frostbite after shoveling the stadium for an Eagles game. He relies on his long-term girlfriend, Edna Stuart, for help. He can't feed himself or brush his teeth.

"You have that low self-esteem, and you are afraid," he said.

Funded primarily through the Pennsylvania's Department of Public Welfare, the 80-hour course costs $900 a person. In the end, the attendants receive state certification as a home health aide.

The classes also teach physical caregiving skills.

Family members may be willing to help, but because they haven't received formal training, they may not understand anatomy or know basic techniques for lifting, transferring and cleaning.

Yesterday's class, at the headquarters of the District 1199C Training and Upgrading Fund in Center City, included a session on mouth care. The health-care workers' union-employer-sponsored training program partners with Liberty Resources on the class.

Amid general laughter, clients and attendants took turns brushing each other's teeth - the attendants to practice proper technique and the clients to learn patience and understanding.

Wanda Jordan of West Oak Lane didn't have a chance to practice on her brother, who has improved greatly since a brain injury. He could not attend yesterday's session. At first, Jordan said, it was difficult "to see my brother naked, clean him up, and change his diapers. I didn't want to say anything about it."

Moore nodded. "Whatever we feel inside," she said, "someone else is also feeling."