Who Cares for Home Care?

AFSCME is giving collective strength to some of America's most solitary workers.

It’s a question we don’t want to ask: What do I do if my loved ones are unable to care for themselves and I can’t help?

An increasing number of Americans are asking this question and finding an answer in home care workers.

Home care workers help those who need assistance to live in their own homes and avoid long-term stays in nursing homes or convalescent centers. As baby boomers age, the demand for these workers will increase. The U.S. Bureau of Labor Statistics predicts that the number of home health aide jobs will grow from approximately 1.4 million in 1996 to 2.5 million by the year 2006 — a 79 percent increase.

But no matter how much they are in demand, no matter how much care they provide, these workers are often on their own when it comes to meeting their own basic need for decent working conditions. Working independently with some of society’s most infirm and isolated people, home care workers lack the support and collective strength that comes from working in a facility with other care providers. They must not only attend to the needs of their clients and keep their own spirits high, but they also often must struggle for benefits and livable wages.

AFSCME is working hard to change that.

GAINING STRENGTH. Haidly Sanchez is a home care worker in New York City — has been for almost 20 years. She loves her job, and she loves the difference her union has made. Before becoming a member of AFSCME Local 389 (Council 1707), Sanchez did not have medical or dental insurance, a pension or paid leave. Now she enjoys these benefits as well as ongoing, paid professional training.

Best of all, the union has given her and other home care workers security. “Before we had the union,” says Sanchez, “when the client was not home, we would lose the four hours’ pay.” Sanchez currently cares for four clients. She has been a housekeeper for David Tuzo for five years. Tuzo has HIV, the AIDS virus.

“David has adopted me as his mother,” she says. His own mother broke off all ties when she learned he had the virus. Sanchez’s help has meant a lot to Tuzo psychologically, but it has had a tremendous impact on him physically as well.

“I used to be 120 pounds,” he says. “Since Mrs. Sanchez has been here, I’ve gained 45 pounds, and they’ve stuck.”

Sanchez has taken classes in nutrition, but her cooking style is her own. The aroma from spices and herbs fills Tuzo’s apartment and has him asking for samples long before dinner is ready.

Tuzo’s stamina has grown as his weight has increased. This means a lot to the relationship with his teenage son, Jamar. Tuzo is an active father who volunteers at Jamar’s school.

He is also an AIDS activist. He and Sanchez cross paths from time to time at health care events: She represents care workers and their unions; he focuses on the AIDS epidemic.

WHO’S IN CHARGE? In San Diego, things are different. California’s estimated 200,000 home care workers are considered independent contractors. Even though their wages come from county governments, home care workers have no employer of record. They are not bound by any standards of care. They are not trained. Wages are rock bottom; benefits, non-existent.

AFSCME affiliate United Domestic Workers (UDW) is in the middle of a home care organizing drive. Initially they had trouble reaching the workers. The county would not give UDW a list — contending that the workers were not employees. UDW asserted that the workers were providing services paid for by public funds. “We won on that issue,” says UDW Sec.-Treas. Fahari Jeffers. “We got access to the list.”

UDW organizers have been meeting with the home care workers for over a year. In the first three months, they signed up 3,200. As the union helps these workers create their own cohesive unit, it is also developing membership services and helping workers to obtain life insurance and medical benefits. UDW will also represent members at disciplinary hearings and help them support their clients when the county terminates services.

HOME SWEET HOME. Henrietta Wallace would surely go to bat for her client Mattie Mae Brown if her services were threatened.

Having support in her home means Brown can carry on a normal life surrounded by the things and the neighbors she loves. She takes care of the bus stop on her corner, sweeping and picking up trash. She’s proud of the plaque there honoring her.

“She loves it here,” says Wallace. “If she moved out, I don’t know what would happen to her.”

Wallace has cared for Brown as she has faced a number of medical problems: a heart condition, blackouts, back problems. For a time, Brown couldn’t walk at all.

“I don’t have any children,” says

Brown. “She makes a great big difference in my life. It’s the same as the medicine I’m taking.”

BUDGET BREAKERS. For years San Diego budgeted 69 hours of care a month for Brown. Wallace spent at least four hours a day, five days a week helping Brown bathe and dress, cleaning, shopping for groceries and cooking meals. When Brown has a doctor’s appointment, the day can run to six hours or more. Wallace was volunteering at least 11 hours a month. Recently, UDW helped Wallace win a review. Now she’s paid for 89 hours a month.

Brown is lucky. She has a home care worker willing to go beyond the call of duty. Wallace also feels fortunate. She has work she loves and clients who need her. But, she says wistfully, “It would be nice to have a school where people could learn skills, nutrition.” And it would be nice if she earned a living wage with decent benefits for the important work she’s doing.

With UDW’s organization — and home care workers’ activism — she will.

By Susan Ellen Holleran

Selecting Home Care

Often the need to find home care for a loved one arises suddenly, and there is pressure to move quickly. Your physician, local hospital, area agency on aging or United Way chapter should be able to refer you to agencies and/or individuals offering home care. But home care is definitely a "buyer beware" category. So here are some questions you may want to ask a prospective provider.

• How long has this provider been serving the community? Can they refer you to satisfied clients?
• How does the provider select and train employees? Are there written personnel policies? Do workers receive fair wages and benefits? Are they bonded?
• Is there literature explaining the provider's services, eligibility requirements, fees and funding sources? Ask if they have a "Patient Bill of Rights" which outlines the rights and responsibilities of the providers, patients and caregivers.
• What are the procedures to handle emergencies? Are caregivers available around the clock?
• Does this provider educate family members on the care given to the patient?
• Are the patient and members of his/her family involved in developing the plan of care? Are they involved in making changes to that plan?
• Are supervisors assigned to oversee the quality of care patients ate receiving in their homes? If so, how often do the supervisors make visits? Who can the patient and/or family members call with questions or complaints? How does the provider follow up on and resolve problems?
• What are this provider's financial procedures? Do they furnish written statements explaining all the costs and payment plan options associated with home care?
• How does this provider ensure patient confidentiality?

The National Association for Home Care can send you a wide variety of materials. Call them at (202) 547-7424, or visit their Web site. Whatever provider you select, remember no one's perfect. Keep in touch with the provider about your loved one. Listen to what he/she says about the care given. And you should be able to visit whenever you like. Unexpected visits can work wonders.