A Comprehensive Look at Paid Personal Support

A Comprehensive Look at Paid Personal Support

A Comprehensive Look at Paid Personal Support

make their dayIn this article, physician and researcher Lisa Izzoni, MD, MSc, presents a clear and comprehensive examination of the role of paid personal support services (PAS) for people with disabilities in the United States. Describing the infrastructure of care delivery, the book provides consumer and workforce perspectives on the shared experience of providing and receiving PAS. Iezoni does not present these perspectives as contrasting or divergent views, but instead as different aspects of a whole – to make his day.

Personal support services, a term preferred by disability advocates over home care, describes assistance with daily activities such as bathing, dressing, and toileting, and supplemental assistive activities that involve thinking and planning, such as paying household bills. and meal planning and preparation. Iezoni’s insights, informed by his career as a researcher, his long association with the disability advocacy community, and his personal experiences with disability, provide the reader with a unique opportunity to learn about the historical context that governs PAS policies today. and affects the complex dynamics involved. Delivery of these essential and often lifesaving services.

The book charts how public policy has influenced the delivery of what is referred to as home care, while providing an overview on the practical aspects of how these services are provided and the military, economic, and cultural elements involved in providing them. Strong focus is maintained. people in their homes. Iezoni approaches this topic primarily from the perspective of people with disabilities with permanent and long-term functional limitations who require assistance with activities of daily living, rather than functional decline due to age. The book emphasizes paid PAs, but also examines the essential role of family caregivers and the gray market of paid workers from the books.

In the face of the nation’s legacy of disability, discrimination, and alienation of people with disabilities, Izzoni 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 have families. parenting can, instead of being unnecessarily institutionalized. She surveys the role of federal laws and policies in creating a market for nursing homes, rather than services that promote community integration. She also introduces the independent living movement and the role of the American with Disabilities Act of 1990, which have played a role in shifting national attention from institutionalization to home- and community-based services.

Iezzoni begins and ends the book by introducing disabled friends and coworkers who struggle to live independently and with dignity in their own homes. Some were successful in abandoning institutional care and preventing future institutionalization after creating an independent life in the community. A man with complex functional limitations survived COVID-19 as his PAS workers looked after him 24/7 at home during his illness. Without their help, he would surely have died. Others had a different experience. One young man faced the prospect of dropping out of graduate school and abandoning his career as a physicist because a suitable PAS was not available in his state. Extensive interviews with home care workers covered in the book also highlighted the challenges, difficulties and rewards of the job, and the second-class status and invisibility of the direct care workforce. Woven as a whole is candid, humorous, and sometimes has personal stories and experiences reported by people with disabilities and PAS workers alike. 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 individuals and millions of others like them, regularly paid assistance with daily chores provided in their homes can make the difference between personal liberty and a life of imprisonment or death.

However, the complex PAS legal and policy framework retains the underlying structural constraints. 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. Intersecting barriers include the lack of widely accessible, affordable housing; low labor wages; limited employment benefits and opportunities; and shortage of workforce.

Research cited in the book shows that an estimated 17 million disabled and older people living in the community need help with daily activities from family caregivers, friends, neighbors and salaried workers. This number is expected to increase significantly over the next few years. About 1.55 million employees provide paid in-home PAS. Estimates suggest that between three million and five million people receive assistance from workers paid for by Medicaid. These workers are primarily women, and 60 percent are people of color. One in four are immigrants. Even as the need for PAS workers is increasing, they get little recognition or advancement opportunities. The depleted status of this workforce was revealed in the early days of the COVID-19 pandemic as they continued to do their jobs in consumers’ homes, without adequate protective gear, hazard pay or sick leave.

Although the burden of COVID-19 placed on the PAS workforce and other home care and nursing facility workers is well publicized, the public still has a limited understanding of why PAS is important to so many. One explanation for the invisibility of PAS workers and those in need of their support is the socially constructed belief that independence basically equates to being able to carry out personal tasks such as bathing and sanitation without physical assistance from another person. If help is needed in these tasks, freedom is lost. This misconception does not easily give way to the idea that individual assistance can facilitate independence for people with significant functional limitations. Iezoni tackles these constructs by sharing details of PAS workers and consumers on how PAS can help consumers gain agency and self-determination.

She also explicitly states the complexity of the consumer/worker relationship, including safety concerns, worker credibility and integrity, and the range of consumer preferences for training, supervising, disciplined, and firing workers. In particular, she definitively describes the unequal power dynamic between workers and consumers, noting that workers are free to leave jobs where a consumer is abusive, abusive, or sexually unsuitable. However, the life of a consumer may depend on the worker arriving on time and performing the required tasks. Thus, some consumers retain workers who are not fulfilling their roles for fear of being left without help. Iezoni highlights the inherent tension between the fundamentally independent living principles of consumer control, self-determination, and the “dignity of risk,” and concerns over safety.

This book is by far the most comprehensive work on every aspect of PAS, from the historic policies that left people with disabilities isolated from their communities, improving disability rights, to the challenges and opportunities ahead. At the heart of the whole story are the perspectives of people with disabilities and PAS workers. Policy makers, disability, aging, and workforce advocates, researchers, and anyone who wants to advance full community integration of people with disabilities should read this book.

author’s note

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

Lisa I. Iezoni. By

Philadelphia (PA): Temple University Press, 2021

284 pp, $31.95

Editor’s Note

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