Making Their Days Happen

Paid Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities

Lisa I. Iezzoni
Book Cover

PB: $31.95
EAN: 978-1-4399-2076-3
Publication: Dec 21

HC: $110.50
EAN: 978-1-4399-2075-6
Publication: Dec 21

Ebook: $31.95
EAN: 978-1-4399-2077-0
Publication: Dec 21

284 pages
6 x 9
13 tables, 1 figs., 9 halftones

Explores the complexities of the interpersonal dynamics and policy implications affecting personal assistance service consumers and providers

Read the Introduction (PDF).

Description

Most Americans—even those with significant disability—want to live in their homes and communities. Unpaid family members or friends often work as “informal” caregivers, helping those who need assistance—and many feel they have no option but to serve. In contrast, paid personal assistance services workers (PAS) provide a lifeline to those consumers with complex needs and limited social networks. However, there is a crisis looming in the increasing needs for paid PAS and the limited available PAS workforce.

Making Their Days Happen explores disability, health, and civil rights, along with relevant federal and state labor policies related to personal assistance services. Lisa Iezzoni addresses the legal context of paid PAS as well as financing mechanisms for obtaining home-based personal assistance. She also draws upon interviews she conducted with paid PAS consumers and PAS workers to explore PAS experiences and their perspectives about their work.

Offering recommendations for improving future experiences of PAS consumers and providers, Iezzoni emphasizes that people with disabilities want to be a part of society, and PAS workers who do this low-wage work find satisfaction in helping them achieve their goals.

Reviews

I was unable to put Making Their Days Happen down because of the sensitive presentation on a complex subject, which has been central to my personal and professional life for decades. Lisa Iezzoni intertwines personal stories of users of personal assistants, inhome support workers, and family members with research and analysis of studies and legislation. She addresses issues of pay for workers and the importance of consumer control. Her vivid examples paint a clear picture of the knowledge we have and the challenges that lay before us in creating an inclusive system. A must-read book for everyone in the health care profession and the disability community, as well as policy makers, educators, legislators, and researchers."
—Judith E. Heumann, International Disability Rights Advocate

Lisa Iezzoni offers a stellar, engaging, comprehensive review of federal and state policies affecting personal assistance services. And she does it through the eyes and voices of those who live in this world every day—both the personal care assistants and consumers. Masterfully weaving their stories with the historical and complex web of laws, regulations, and finance, she keeps us focused on what it means to people who strive to achieve what we all want: to live in our homes and communities with purpose. At the AARP Public Policy Institute, we call that People First in Policy . As Iezzoni says, ‘policy is personal.’ Indeed.
—Susan C. Reinhard, Senior Vice President at the AARP Public Policy Institute, and Chief Strategist for the Center to Champion Nursing in America and Family Caregiving Initiatives

Table of Contents

Acknowledgments

1. What’s Needed?

I POLICY AND SOCIAL CONTEXTS
2. Where People with Disability Live and Recognizing Their Civil Rights
3. Paying for Home-Based Personal Assistance Services
4. Paid Personal Assistance Services Workforce and Labor Policies

II INTRODUCTION TO PAS CONSUMERS AND PAs
5. Consumers of Personal Assistance Services
6. People Providing Personal Assistance Services

III APPROACHES TO PROVIDING PAID PAS
7. Personal Assistance Services from Agencies
8. Self-Directed Personal Assistance Services

IV EXPERIENCES AND PERCEPTIONS OF RECEIVING AND PROVIDING PAS
9. Relationships and Intimacy
10. Trust and Respect
11. Physical and Emotional Safety
12. Money Matters

V MAKING PAS HAPPEN
13. Finding a Good Fit
14. PAS in the Future

Epilogue
Notes
Index

About the Author(s)

Lisa I. Iezzoni, MD, MSc is a Professor of Medicine at Harvard Medical School and based at the Health Policy Research Center–Mongan Institute at Massachusetts General Hospital. She is the author or editor of several books, including When Walking Fails: Mobility Problems of Adults with Chronic Conditions.


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