Make their days go by, by physician and researcher Lisa Iezzoni, MD, MSc, presents a frank and comprehensive examination 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 SAP. Iezzoni presents these perspectives not as contrasting or diverging points of view, but rather as different aspects of a whole – to make their days happen.
Personal assistance services, a term preferred by disability advocates to home care, describes assistance with daily activities such as bathing, dressing and grooming, as well as complementary instrumental activities that involve thinking and planning, such as paying household bills and planning and preparing meals. Iezzoni’s insights, informed by her career as a scholar, 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 delivering these essential and often life-saving services.
The book describes how public policy has influenced the delivery of what is often referred to as home care, while emphasizing the practicalities of how these services are delivered and the logistical, economic and involved in making them available to people in their homes. Iezzoni approaches the subject primarily from the perspective of people with disabilities 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 examines the critical role of family caregivers and the gray market for paid workers.
In the face of the national legacy of ableism, discrimination and segregation of people with disabilities, Iezzoni argues that PAS enables people with disabilities to live at home and in their communities, where they can go to school, work and raise families. , rather than being unnecessarily institutionalized. She examines the role that federal laws and policies have played in creating the market for retirement homes rather than services that promote community living. It also presents the role that the Independent Living Movement and the Americans with Disabilities Act of 1990 played in shifting national attention from institutionalization to home and community services.
Iezzoni begins and ends the book by featuring friends and colleagues with disabilities who have struggled to live independently and with dignity in their own homes. Some have managed to leave institutional care and avoid future institutionalization after establishing an independent life in the community. A person with complex disabilities survived COVID-19 because his PAS workers cared for him 24/7 at home throughout his illness. Without their help, he would surely be dead. Others have had a different experience. A young man faced the possibility of dropping out of college and a career as a physicist because the appropriate PAS was not available in his state. In-depth interviews with home care workers included in the book also laid bare the challenges, hardships and rewards of the job, as well as the second-class status and invisibility of the care workforce. direct. Candid, humorous and sometimes raw personal stories and experiences from people with disabilities and PAS workers are woven throughout the book. These stories clearly illustrate why the disability community has 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 daily chores provided in the home can be the difference between personal freedom and a life of confinement, or even death.
However, the SAP’s complex legal and policy framework perpetuates inherent structural barriers. For example, Medicaid’s institutional bias requires states to provide institutional care, but in-home PAS is optional. Other Medicaid policies allow for wide state variation in eligibility for services, and some states have long waiting lists for PAS. Overlapping barriers include widespread shortages of accessible and affordable housing; low wages for workers; limited benefits and job opportunities; and labor shortages.
Research cited in the book suggests that approximately 17 million people with disabilities and older people living in the community need help with daily activities from family caregivers, friends, neighbors and paid workers. This number is expected to increase significantly over the next few years. About 1.55 million workers provide paid home PASs. Estimates suggest that between three and five million people receive help from workers paid for by Medicaid. These workers are mostly women and 60% are people of color. One in four is an immigrant. Even though the need for PAS workers is on the rise, they receive little recognition or opportunities for advancement. The early days of the COVID-19 pandemic revealed the undervalued status of this workforce as they continued to do their jobs, in consumers’ homes, without adequate protective gear, hazard pay or furlough. of illness.
Although the burden imposed by COVID-19 on the SAP workforce and other workers in home care and nursing facilities has been widely publicized, the public still has a limited understanding of why PAS is essential for so many people. One explanation for the invisibility of PAS workers and the people who need their support is the socially constructed perception that independence basically equates to being able to perform personal tasks such as bathing and hygiene without the physical assistance from another person. If these tasks require assistance, independence is lost. This erroneous perception does not easily give way to the idea that personal assistance is equivalent to and can facilitate the autonomy of people with significant functional limitations. Iezzoni tackles these constructs by sharing PAS workers’ and consumers’ descriptions of how PAS can help consumers achieve agency and self-determination.
She also candidly exposes the complexities of consumer/worker relations, including issues of worker safety, reliability and honesty, and the range of consumer preferences for training, supervision, discipline and dismissal of 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, a consumer’s life may depend on a worker arriving at the scheduled time and completing the required tasks. Thus, some consumers retain workers who do not fulfill their role for fear of finding themselves without help. Iezzoni highlights the inherent tension between the fundamental tenets of independent living of consumer control, self-determination, and the “dignity of risk” and concerns about safety.
This book is the most comprehensive work to date on all aspects of PAS, from the historic policies that have led to the isolation of people with disabilities from their communities, to disability rights reforms, to the challenges and opportunities ahead. Throughout, the perspectives of people with disabilities and PAS workers are central to the narrative. Policymakers, disability, aging and workforce advocates, researchers, and anyone else interested in advancing the full community inclusion of people with disabilities should read this book.
Mary Lou Breslin works for the Disability Rights Education and Defense Fund, which has taken policy positions on Long-Term Services and Supports (LTTS) and Home and Community Services (HCBS). Henry Claypool and Mary Lou Breslin are associated with the Community Living Policy Center (CLPC), the Heller School at Brandeis University. The CLPC has adopted political positions on the LTSS and the HCBS.
By Lisa I. Iezzoni
Philadelphia (PA): Temple University Press, 2021
284 pages, $31.95
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