Making Their Days Happen
Paid Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities
Publication: Dec 21
Publication: Dec 21
Publication: Dec 21
6 x 9
13 tables, 1 figure, 9 halftones
Explores the complexities of the interpersonal dynamics and policy implications affecting personal assistance service consumers and providersRead the Introduction (PDF).
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.
“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
"Making Their Days Happen is an extraordinary work…. As many advocates and policymakers at the local, state, and federal levels grapple with the workforce crisis, this book advances our knowledge of the issues and the real-life impacts of policies on the people's lives, hopefully leading us forward."”
—Disability and Health Journal
Table of Contents
1. What’s Needed?
I POLICY AND SOCIAL CONTEXTS
3. Paying for Home-Based Personal Assistance Services
4. Paid Personal Assistance Services Workforce and Labor Policies
II INTRODUCTION TO PAS CONSUMERS AND PAs
6. People Providing Personal Assistance Services
III APPROACHES TO PROVIDING PAID PAS
8. Self-Directed Personal Assistance Services
IV EXPERIENCES AND PERCEPTIONS OF RECEIVING AND PROVIDING PAS
10. Trust and Respect
11. Physical and Emotional Safety
12. Money Matters
V MAKING PAS HAPPEN
14. PAS in the Future Epilogue