For many, an attendant's care enhances quality of life
Jerry Boyd has an extra pair of hands in the morning. While his wife gets ready for work and prepares their 1-year-old son for day care, Boyd, who has cerebral palsy, gets two hours of early-morning help grooming and dressing for his job from a local nursing aide. Without help from such personal care attendants, Boyd doubts he or even his wife could work.
''PCAs are instrumental for the quality of our lives," said Boyd, 36, who has weekday and weekend attendants come to his Malden home through a state Medicaid-funded program for people with chronic disabilities who need help with two or more activities of daily living. ''I literally wouldn't be able to work or get out of bed without the assistance I have."
We all depend on one another's help with caregiving throughout our lives. You may pick up your neighbor's kid one day, or ask a friend to drive you home from a medical procedure. But more and more, we will depend on a web of both paid and unpaid care to help our country's growing numbers of aging or disabled who want to live independently. The challenges to setting up such systems are many, but the benefits ripple through society.
Personal care attendants are a saving grace, and yet the system needs improving, many agree. Under the state's program, about 13,000 people get help from about 20,000 attendants who are paid $10.85 an hour. Since the work is low paid, often part time, and lacking benefits, turnover is a problem. It's therefore a blessing and a challenge that, unlike in private agency care, the consumer is in charge of hiring, firing, and training their own workers.
''There's the whole issue of putting the ads in the paper and praying the person you pick works out," said Boyd, who had to find two new attendants in the past year.
Brooke Larmie, Boyd's weekday attendant, said she likes the work because it's extra income and good experience for her nursing career. She helps Boyd from 5 to 7 a.m., then works full time as a nurse's aide at Winchester Hospital. But in the fall, she may move on to attend nursing school in her native Vermont.
''I've only been there six months, but I'm almost like part of the family," said Larmie.
To help with recruitment and retention issues, Massachusetts in March began allowing relatives to work as paid personal care attendants as long as they are not caring for someone they are legally responsible for, such as a spouse or a child. The change will give people more options for finding helpers, said Gerry Morrissey, assistant secretary for health and human services. (To find out how to sign up, go to www.rewardingwork.org.)
A bill before the state House Ways and Means Committee would set up a workforce council of workers and consumers. Based on a model operating in a handful of other states, including California, the council would match jobs with workers and negotiate with workers seeking better wages and benefits. The bill likely paves the way for union representation for these workers.
Backed by labor, senior, and disability groups, the bill has been met with wariness from some private home-care firms worried about competition for scarce workers. Although Morrissey says the state should do more to recruit workers and help them manage their finances, he worries the bill will limit consumer choice. ''You could constrain the essence of the program," he said.
Bill Henning, the executive director of the Boston Center for Independent Living, said his organization had similar concerns, but decided to endorse the bill because it specifically preserves a consumer's right to hire, fire, and train PCAs. The bill also requires the Legislature and governor to consider appointing advocates for the elderly and the disabled, and experts in the PCA system as council members.
Whether or not the legislation passes, the issue of how we treat our paid caregivers is crucial. We need to do more on the policy front to value our child care, elder care and healthcare workers -- so that they can better juggle work and home lives and we can do the same. As well, we must become better-schooled individually at working with the paid caregivers we will increasingly need.
For working people with disabilities, managing a roster of helpers is like running a small business, according to Managing Personal Assistants, a consumer guide by the Paralyzed Veterans of America. (Available for $5 at www.pva.org.) Good communication and lots of planning are key, says the guidebook, which is useful for anyone dealing with paid caregivers in their home.
Anthony, a Boston-area quadriplegic Web designer who didn't want his last name used, said he tries to keep his relationship businesslike but amicable with his five assistants. In the future he hopes they will get improved wages and benefits. They deserve more for all that they do for others, Anthony said, noting that without their help, he couldn't work.
''Without having the stability to plan ahead, it would be impossible," he said.
Maggie Jackson's Balancing Acts column appears every other week. She can be reached at maggie.jackson@att.net. 
