Abstract
This is a well-researched exploration of the nearly 2 million personal assistance services (PAS) workers in the U.S. providing essential aid to people living with long-term disabilities. It is a tribute to these workers, many of whom are women of color and labor 60–80 h weekly with few benefits caring for people in their homes. The author, Dr. Lisa Iezzoni, a Professor of Medicine at Harvard Medical School, discloses that she has multiple sclerosis and is herself a “consumer” with a long-term disability. She acknowledges the valuable assistance of her husband in providing the PAS care she requires.
Dr. Iezzoni addresses what she terms “an ineluctable irony … The discordance between how consumers value PAS and the worth society ascribes to this work – as measured by income, public recognition, and prestige – is vast” (p. 86). As the mother of an intellectually disabled autistic adult, this reviewer can personally attest to decades of struggling to find and retain reliable personal assistants (PAs). The need is huge and the value immense, yet it is a never-ending battle. In the words of Michael, one of the consumers interviewed for this book, “I absolutely need PAs to live. I can’t function for much more than maybe 12 hours without them” (p. 214).
The author begins Part I with a historical overview of the role played by disability rights activists in the post-World War II era, culminating in the Rehabilitation Act of 1973 and other legislative efforts that presaged the passing of the Americans with Disabilities Act (ADA) in 1990. After detailing the many twists and turns that led to the emergence of PAS, she concludes that policymakers have coalesced around the “supports that enable individuals with disabilities and older adults who would otherwise require institutional care to live independently in the community” (p. 43).
In Parts II through V, the author brings the complex world of PAS to life by describing the words and experiences of 21 disabled consumers and the 20 PAs who “make their days happen.” We learn about the many ways in which the lives and needs of these two groups align or diverge. One of the strengths of this book is the level of personal detail included in each chapter. Many of the individuals discussed in the book consented to be photographed and were often very frank in the opinions they shared with the author.
Another strength is that the PAS movement is presented as a dynamic, evolving process. The author makes it clear this topic will come to preoccupy more and more Americans as the years progress. “Finding sustainable solutions to the looming paid PAS crisis requires understanding the intertwined and complex policy, personal, and interpersonal factors affecting in-home ADL supports” (p. 7).
An interesting device in each chapter is to present the topics from both points of view. Thus, we see “Perspectives of Consumers” and “Perspectives of PAs” repeated throughout the book. Chapter topics cover nearly every aspect of a disabled person’s life. These include whether aids are hired by an agency or hired directly by the consumer, issues of trust and intimacy, issues regarding safety and abuse, and issues concerning hiring, firing, and paying additional funds privately. The author leaves a few stones unturned.
In summary, this book is ideal for any person contemplating the need to engage the services of a personal care assistant. As both a social worker and someone who utilizes PAS, I enjoyed the comprehensive treatment of this topic. In addition, policymakers in all fields will benefit from the balanced approach to this complex societal need.
