Our society places the highest value on independence; doing things by ourselves for ourselves. Because of this, we rarely think about what it would be like to need someone else’s assistance with even the most basic activities: getting dressed, brushing teeth, eating, driving, or filling out paperwork. Thus, when individuals are faced with changes in their physical abilities, the adjustment to using personal care assistance can be challenging.
Adjusting to a disability or physical limitation is a complex process. Practitioners traditionally focus treatment on regaining physical functioning, rather than on how to successfully navigate receiving assistance and learning how to hire, train, supervise, and retain personal assistants. Additionally, most of the literature on professional caregiving focuses on the care providers. We want to spend some time addressing the other side. What is it like to be the recipient of personal care? And what can we do to make the process easier, less frustrating, and more efficient?
One of the most complicated aspects of being a personal care recipient is identifying what type of help you need and how you want that help to be delivered. People don’t think much about how personal care tasks are completed. For example, everybody does not brush his or her teeth in the same way. Some people like heavy brushing, some people like light brushing; some like to start on the upper teeth, while others prefer the bottom.
Now you may be asking, “What is the big deal?” The big deal comes when a person who needs assistance simply states, “I need help brushing my teeth.” This can cause problems, because the person helping complete the task will naturally do it “their” way rather than asking how the care recipient would like the task to be completed. For the person receiving help, this may lead to frustration, resentment, and anger.
People receiving personal care assistance often feel they don’t have the right to request that a task be completed in a certain way. These individuals are often conditioned to be grateful for receiving help, period, rather than taught how to be a savvy consumer of assistance. When individuals express their desire for care to be delivered in specific ways, they may be labeled by service providers as “difficult,” “challenging,” or “resistant.” Clinicians assisting people in navigating personal assistant services should emphasize identifying not just one’s needs, but also the way in which one wants the task to be completed. Utilizing personal care assessment screening tools is a useful strategy (See PCA screening assessment).
Once an individual has identified their specific needs and preferences, the next step is to develop a hiring process. Here, it is critical to determine what qualities and personality characteristics the care recipient values, to help in screening for the best fit. This is essential due to the personal nature of the position. Being a personal assistant requires intimate interactions within the care recipient’s personal space. Personality strongly affects the working relationship between recipient and care provider; being able to assess this dynamic early on can predict success in retention of personal assistance. Some individuals want a personal assistant who will dote on them, while other individuals find this style offensive and demeaning. Healthcare professionals can play an instrumental role in determining which characteristics are most valued for the recipients of personal care services.
For many reasons, personal care assistance has traditionally not been viewed as a professional role. First and foremost is the low pay. According to the National Bureau of Labor Statistics, the average hourly rate for personal care aides is $10.92: less than $23,000 annually. In many areas, this is not a living wage. Thus, it can be very difficult to attract competent, motivated employees. In-home support services are complicated systems to navigate for both recipient and employee. As a result, there is a real dearth in qualified applicants.
Even when one is successful at identifying and hiring personal assistants, the next challenge is retention of these qualified individuals. This is where healthcare professionals can play a beneficial role, by helping care recipients to develop structured evaluation methods, as well as processes to facilitate growth and development for the personal assistants. Structured evaluation rubrics can be useful tools in creating and maintaining a professional relationship based on transparent communication and clear expectations.
In sum, persons with disabilities face numerous challenges in finding, training, and retaining personal care assistants who can help them with daily needs. It’s important to understand that how care is provided is just as important as the care itself, and that the care provider–recipient relationship is a crucial one. Empowering persons with disabilities to treat the personal care relationship as a “real job” can help ensure satisfaction for both parties.
Patricia A. Parmelee, PhD, is Director of the Alabama Research Institute on Aging and Professor of Psychology at the University of Alabama. A social psychologist by training, she has been active in research and services for the elderly for more than 30 years, and is nationally known for her work on quality of life and quality of care for chronically ill older persons. Prior to joining the UA faculty in 2008, Dr. Parmelee held positions at the Emory University School of Medicine, the Atlanta Veterans Affairs Medical Center, and the Birmingham/Atlanta Geriatric Research, Education and Clinical Center. She previously served as Vice President for Outcomes Management at Genesis Health Ventures, a Pennsylvania-based provider of long-term care; as Associate Director of Research and Senior Research Psychologist at the Philadelphia Geriatric Center, and as Associate Professor of Clinical Epidemiology at the University of Pennsylvania School of Medicine. She is an elected Fellow of both the American Psychological Association and the Gerontological Society of America.
Alette Coble-Temple, PsyD, is a professor of clinical psychology at John F. Kennedy University. She is a noteworthy member of the disabled community as a fierce advocate for equal rights for individuals with disabilities. In addition, she is also a leader among women in the field of psychology. She currently sits as both a member of the American Psychological Association Committee on Women in Psychology, and as a member of the APA’s Leadership institute for Women in Psychology. She lives with cerebral palsy and much of her work has focused on disability rights. In 2015, she won the Ms. Wheelchair California pageant.
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