BREAKING NEWS: New drug approved by the FDA for Duchenne muscular dystrophy. Learn more about this new treatment option.

Where Are all the PCAs?

Working conditions, population shifts make good personal assistants hard to find — and keep

Wanted: Entry-level Taco Bell “crew worker.” Candidate must be able to perform one or more repetitious tasks in a highly standardized manner and operate automatic machinery. Pay: “competitive” wage with the possibility of raises. Immediate access to basic benefits package. Generous 401K match. Opportunities for training and career advancement.

Wanted: Personal care assistant (PCA) to help adult with neuromuscular disease manage activities of daily living. Candidate must be capable of heavy lifting, extremely reliable, able to follow complex instructions, comfortable helping with intimate personal tasks, skilled at minor medical care and clear-thinking in an emergency. Prefer flexible, friendly personality, nonsmoker, no drugs. Part-time; hours may vary month to month. Pay: minimum wage. No raises, benefits or paid sick/vacation days.

From a purely monetary perspective, it’s hard to see why someone would choose to become a personal care assistant.

Luckily, there are other attractions to the job, such as flexible and part-time hours, working with people and getting a chance to have a meaningful impact on someone’s life.

“This is people’s passion, to care for and serve other individuals,” says Karin Stockwell, senior director at Dungarvin Minnesota, a large caregiver provider agency.

Without personal assistants, living at home and leading an independent, community life would be a pipe dream for many individuals with disabilities. PCAs also supplement families’ care, enabling loved ones to stay at home rather than going to nursing homes.

The burning question is: Will there be enough PCAs to meet the growing need for services in the coming years?

The stark answer is no. There aren’t enough now. Part of the challenge is discovering how people who rely on these services — the consumers — can improve the situation.

Into the gap

“I call this the perfect storm,” says Renee Pietrangelo, CEO of the American Network of Community Options and Resources based in Alexandria, Va. ANCOR is a national network of agencies that provide PCAs, or “direct support professionals,” to people with disabilities.

“Historically we have never had so many different confluences coming together at the same time. We’re in a crisis now and the gap starts opening up in 2009.”

“The gap” is the difference between the number of PCAs needed and the number available; by the year 2010 more than 780,000 additional workers must be found to staff long-term care positions. The “confluences” are the simultaneous factors wedging open this gap:

  • A policy shift away from institutions. At federal and state levels, there’s a clear trend toward home- and community-based care. “Consumer-directed care” models are being adopted by many state Medicaid programs, giving consumers greater control over finding, paying, training and managing their own PCAs. But governmental support of community living stops at the cash register; Medicaid reimbursement for PCAs has remained static and has even been cut in some states.
  • Fewer workers. The average PCA is a female aged 25-44, a population segment that’s steadily shrinking.
  • More consumers. People with disabilities are living longer and more complex lives. Meanwhile, their parents/caregivers are aging out. And then there’s “the big Kahuna,” says Pietrangelo — the 80 million baby boomers soon to be swelling the ranks of the elderly, competing for help.

Consequences of the gap

“This is one industry you can’t outsource to other countries,” Stockwell wryly notes.

From the hassles of finding and training new people, to the exhausting overload put on family caregivers due to the lack of help, to the dangers of being left unassisted because a PCA cancelled and no emergency backup could be found, the daily effects of the PCA shortage are everywhere.

Therese Nadeau, 36, has spinal muscular atrophy and is “100 percent reliant” on PCA support. A program specialist for the Community-Integrated Services and Supports Grant (C-PASS) at the University of Connecticut Center on Disabilities in Farmington, Nadeau has written a curriculum with other employers to help Connecticut consumers become better managers of their personal assistants, with the goal of boosting recruitment and retention.

Even with this advantage, Nadeau still experiences occasional PCA shortages.

“It’s so difficult to keep my regular schedule when I have to schedule day-to-day with personal assistants,” she says. “It really turns my life around. Fortunately I have family and friends who can help fill in but that can be really stressful.”

The consequences go beyond stress. A recent study of women who rely on PCAs for independence and community living found they experienced high levels of various forms of abuse, from both paid and unpaid caregivers, in both consumer- and agency-directed care. Study participants identified the greatest barriers to preventing or managing this abuse as “low wages, manpower shortages and lack of backup providers” — in other words, they put up with it because they can’t get anyone else.

What do PCAs want?

“People think it’s only about wages,” observes Pietrangelo. “Well, wages draw people into the field, but it’s other things that make them want to stay.”

Of course higher wages and affordable benefits are essential components of any large-scale solution to the shortage. But PCAs also are more likely to stay in jobs offering professional working conditions, like training and continuing education, supportive and culturally sensitive supervision (PCAs come from diverse cultural, ethnic and linguistic backgrounds), and a sense of being a valued employee, says Pietrangelo.

A patient, understanding consumer also makes a difference. Sometimes PCAs become the target of a consumer’s frustrations or family members’ hypercriticism. Sometimes consumers act as if PCAs are mind readers.

“With the high turnover, people get frustrated telling the new guy again how to do something,” says Stockwell. “But it can be scary to work with someone for the first time and do intimate care. It can be tough for the person having it done and tough for the person doing it.”

What can consumers do?

Advocates urge becoming educated about the issues and sharing your views with your federal and state legislators and local press. Strategies for dealing with the shortage include:

  • Raise pay and benefits. The bipartisan Direct Support Professionals Fairness and Security Act (HR 1264), introduced in 2005, would increase wages paid to PCAs through the Medicaid program. ANCOR expects it to be reintroduced in the House this spring, and introduced in the Senate later in the year, says Pietrangelo. Meanwhile, several states are exploring ways to fund benefits for their Medicaid care providers, and other states have appointed task forces to study long-term care issues.
  • Create better backup systems. An AARP Public Policy Institute report released in December 2006, “Bridging the Gaps: State and Local Strategies for Ensuring Backup Personal Care Service,” concludes states are doing a haphazard and incomplete job of providing and monitoring effective backup systems. The report cites several model backup programs and suggests strategies.
  • Form alliances. ANCOR ( and United Cerebral Palsy ( have partnered on a national e-advocacy effort called “Who Will Care?” The campaign includespublicpolicylobbying, research on the causes and effects of the shortage, and efforts to raise publicconsciousness. “American Worker,” a fun flash cartoon illustrating the issues, can be seen at
  • Improve training and supervision. The National Association of Direct Support Professionals offers a PCA credential program and has compiled a PCA “code of ethics.” Consumer training in management skills also is valuable, such as the University of Connecticut’s seven-lesson C-PASS curriculum for consumers, covering such topics as conflict resolution and employer safety. It will be available later this year. For more information, call the University of Connecticut Center on Disabilities at (866) 623-1315, or visit
  • Tap new people; use technology. In the near future, new PCA workers may be found in the large crop of retiring baby boomers looking for supplemental income, says Pietrangelo. Easier access to foreign workers also could help close the gap. Some consumers may not even need a human PCA on site, thanks to technology like remote video monitoring and the emerging field of robotics.
  • Change societal perceptions. Although vitally important, the job of PCA is devalued, says Pietrangelo.

“Consumers, parents and friends can make others aware of the value of this work, the fact that it’s complex and challenging.

“Wouldn’t it be nice if our heroes were people who dedicate themselves to supporting other people?” she asks.

“It’s teachable. Through education, you can shape a generation that really appreciates and values this kind of work."

Also see "Is Your PCA Driving You Crazy?" and "My Favorite PCA."

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

Request Information