Search

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.

Nearly twenty percent of Americans live today with some sort of disability, and this number will grow in coming decades as the population ages. Despite this, the U.S. health care system is not set up to provide care comfortably, safely, and efficiently to persons with disabilities. Individuals with disabilities can therefore face significant barriers to obtaining high quality health care. Some barriers result from obvious impediments, such as doors without automatic openers and examining tables that are too high. Other barriers arise from faulty communication between patients and health care professionals, including misconceptions among clinicians about the daily lives, preferences, values, and abilities of persons with disabilities. Yet additional barriers relate to health insurance limits on items and services essential to maximizing health and independence. This book examines the health care experiences of persons who are blind, deaf, hard of hearing, or who have difficulties using their legs, arms, or hands. The book then outlines strategies for overcoming or circumventing barriers to care, starting by just asking persons with disabilities about workable solutions. Creating safe and accessible health care for persons with disabilities will likely benefit everyone at some point. This book has three parts. The first part looks at the historical roots of healthcare access for persons with disabilities in the United States. The second part discusses the current situation and the special challenges for those with disabilities. The third part looks forward to discuss the ways in which healthcare quality and access can improve.