A comprehensive look at paid personal assistance

Making their days happen, by physician and researcher Lisa Yezoni, MD, MSc, presents a candid and comprehensive review of the role paid personal assistance services (PAS) play for people with disabilities in the United States. By describing the care delivery infrastructure, the book provides consumer and workforce perspectives on the shared experience of providing and receiving PAS. Iezzoni presents these perspectives not as contrasting or different viewpoints, but instead as different aspects of a whole – to make their days happen.

Personal assistance services, a term preferred by disability advocates over home care, describes assistance with daily activities such as bathing, dressing, and toileting, as well as the additional instrumental activities that involve thinking and planning, such as paying household bills and planning and food preparation. Iezzoni’s insights, informed by her career as a researcher, her long association with the disability advocacy community, and her personal experience with disability, offer the reader a unique opportunity to learn about the historical context that influences PAS policies today and the complex dynamics , involved in the provision of these essential and often life-sustaining services.

The book describes how public policy has influenced the provision of what is often called home care, while maintaining a firm focus on the practical aspects of how these services are provided and the logistical, economic and cultural elements involved in making them available to people in their homes. Iezzoni approaches the subject primarily from the perspective of disabled people with permanent and long-term functional limitations who need assistance with activities of daily living, rather than those with functional decline due to age. The book focuses on paid PAS, but also looks at the essential role of carers and the gray market of paid-on-the-books workers.

In the face of the nation’s legacy of ableism, discrimination and segregation of people with disabilities, Iezzoni argues that PAS makes it possible for people with disabilities to live at home and in their communities, where they can go to school, work and raise families. rather than being needlessly institutionalized. She examines the role that federal laws and policies have played in creating a market for nursing homes rather than services that promote community integration. She also presents the role that the Independent Living Movement and the Americans with Disabilities Act of 1990 played in shifting the national focus from institutionalization to home and community-based services.

Iezzoni begins and ends the book by introducing friends and colleagues with disabilities who have struggled to live independently and with dignity in their own homes. Some were able to leave institutional care and protect themselves from future institutionalization after establishing independent living in the community. One man with complex functional limitations survived COVID-19 because his PAS staff cared for him around the clock at home throughout his illness. Without their help he would surely die. Others had a different experience. One young man was faced with the possibility of abandoning higher education and a career as a physicist because a suitable PAS was not available in his state. The extensive interviews with home care workers included in the book also reveal the challenges, difficulties and rewards of the work and the second-class status and invisibility of the direct care workforce. Interwoven throughout are candid, humorous and sometimes vivid personal stories and experiences reported by both disabled people and PAS staff. These stories clearly illustrate why people with disabilities have long advocated for PAS and what it takes to live independently with significant functional limitations. For these people and millions like them, regularly paid help with everyday tasks provided in their homes can make the difference between personal freedom and life in prison or even death.

However, the complex legal and political framework of PAS maintains inherent structural barriers. For example, Medicaid’s institutional bias requires states to provide institutional care, but home-based PAS is optional. Other Medicaid policies allow for wide state variation in eligibility for services, and some states have long waiting lists for PAS. Intersecting barriers include a widespread shortage of affordable and accessible housing; low wages for workers; limited benefits and employment opportunities; and labor shortages.

Research cited in the book suggests that approximately 17 million people with disabilities and older adults living in the community need help with their daily activities from caregivers, friends, neighbors, and paid workers. This number is expected to grow significantly over the next few years. About 1.55 million workers provide paid PAS at home. Estimates show that between three million and five million people receive assistance from Medicaid-paid workers. These workers are mostly women, and 60 percent are people of color. One in four is an immigrant. Although the need for PAS workers is growing, they receive little recognition or opportunities for advancement. The early days of the COVID-19 pandemic exposed the undervalued status of this workforce as they continued to do their jobs in consumers’ homes without proper protective equipment, hazard pay or sick leave.

Although the burden of COVID-19 on the PAS workforce and other workers in home care and nursing facilities has been well publicized, the public still has limited understanding of why PAS is critical for so many people. One explanation for the invisibility of PAS workers and people who need their support is the socially constructed notion that independence is fundamentally equated with being able to perform personal tasks such as bathing and hygiene without physical assistance from another person. If these tasks require assistance, then independence is lost. This misconception does not give way easily to the idea that personal assistance equates to and can facilitate the independence of people with significant functional limitations. Iezzoni addresses these constructs by sharing PAS workers’ and users’ descriptions of how PAS can help users achieve agency and self-determination.

It also candidly exposes the complexities of the consumer/worker relationship, including concerns about worker safety, reliability, and honesty, as well as the range of consumer preferences for training, supervising, disciplining, and firing workers. Notably, she also definitively describes the unequal power dynamic between workers and consumers, noting that workers are free to leave a job where a consumer is abusive, disrespectful, or sexually inappropriate. However, the user’s life may depend on the worker arriving on schedule and completing the required tasks. Thus, some users retain workers who are not performing their role for fear of being left without help. Iezzoni sheds light on the inherent tension between independent living’s fundamental principles of consumer control, self-determination and “risk dignity,” and safety concerns.

This book is the most comprehensive work to date on every aspect of PAS, from the historical policies that led to the isolation of disabled people from their communities, to disability rights reforms to the challenges and opportunities ahead. Throughout, the perspectives of disabled people and those working in PAS are central to the narrative. Policymakers, disability, aging and workforce advocates, researchers, and anyone else who wants to advance the full integration of people with disabilities into society should read this book.

Authors’ note

Mary Lou Breslin works for the Disability Education and Advocacy Fund, which has taken policy positions on long-term services and supports (LTTS) and home and community-based services (HCBS). Henry Claypool and Mary Lou Breslin are affiliated with the Community Living Policy Center (CLPC), Heller School at Brandeis University. CLPC has taken policy positions on LTSS and HCBS.

By Lisa I. Iezzoni

Philadelphia (PA): Temple University Press, 2021

284 pp., $31.95

Editor’s note

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