DOI: 10.3886/e208968v1
title: “Everything is a mess. I’m just trying to survive it.” Impacts of COVID-19 on personal assistance services. Journal of Health Care for the Poor and Underserved

description: In
 the United States, eight million people have disabilities related to
 self-care (having serious difficulty with bathing and dressing). Of these,
 approximately 2.3 million receive paid personal assistance services (PAS) to
 assist with activities of daily living. The National Survey on Health and
 Disability asked a series of questions about the impacts of COVID-19 for
 disabled people including disruptions in PAS. We used data from an open-ended
 question "How did you manage without the help you needed in your
 home?" to bring light to both the importance of, and vulnerabilities
 associated with, receipt of PAS. Themes from qualitative responses (n = 108)
 included (1) causes of unmet need, (2) consequences of unmet need, and (3)
 adaptations to overcome the loss of PAS. Results provide compelling evidence
 about the importance of the personal care attendant workforce and needed
 policies to address worker shortages to support community-based living
 options.
description: Presence of Common Scales: 
 
 
 <b>Dependent
 Variables:</b>
 <br>
 Whether personal assistance
 services were needed or used since March 2020.<br>Delays or unmet needs for
 personal assistance services.<br>Reasons for delaying or
 foregoing services (COVID-19, cost, transportation, insurance constraints).<br>Qualitative responses to the
 question about managing without needed help.<b>Independent Variables:</b>
 <br>
 
 Demographic characteristics
 (age, gender, race/ethnicity, education level, living alone, poverty level).
 <br>
 
 Types of disabilities (as per
 the American Community Survey (ACS) 6-item question set).
 
 
 Experiences of delays or unmet
 needs for personal assistance services.
description: Participants,
 who were 18 years or older, lived in the U.S., and answered yes to the
 question “Do you have a physical condition, mental illness, impairment,
 disability, or chronic health condition that can affect your daily activities
 OR that requires you to use special equipment or devices, such as a
 wheelchair, walker, TDD [telecommunications device for the deaf] or
 communication device?” Sample size of 1,638 in total
description: Participants,
 who were 18 years or older, lived in the U.S., and answered yes to the
 question “Do you have a physical condition, mental illness, impairment,
 disability, or chronic health condition that can affect your daily activities
 OR that requires you to use special equipment or devices, such as a
 wheelchair, walker, TDD [telecommunications device for the deaf] or
 communication device?". Smallest Geographic Unit: United States
description: mail questionnaire; web-based survey; 
 NSHD
 Data provided by Kansas University. Data used for this study was the third
 wave of the NSHD data described below. 
 The
 NSHD provides detailed information for a nationally representative group of
 US adults aged 18-64 about their experiences with health insurance and health
 care services.  The third wave of the
 NSHD occurred January- April 2021 with a sample size of 1,638. Created
 without the need to collect identifiable information, longitudinal analyses
 of NSHD data will be achieved through probability matching on specific
 non-identifiable variables.