Squeezed: Caregivers Report Less Help, More Stress

A new survey from the University of Minnesota and The Arc of the United States shows more than half of family caregivers are suffering from very high or extreme levels of stress, despite a nationwide work-from-home trend. More than 40 percent have left their jobs to care for their loved ones with intellectual and developmental disabilities (IDD), and 90 percent say their careers have been negatively affected by their caregiving responsibilities, including many who are underemployed.

The survey and report, 2023 Family and Individual Needs for Disability Supports (FINDS), includes input from 3,118 participants caring for family members or friends with IDD across all 50 states and U.S. territories. It was presented to the National Institute on Disability and Independent Living Rehabilitation Research (NIDILRR) at the U.S. Department of Health and Human Services, which funds the project.

“The shortage of direct support professionals is causing a lot of hardship for families, and is also causing their loved ones with disabilities to miss out on the active lives they want to live,” said Lynda Lahti Anderson, co-author of the report, along with Sandra Pettingell. The authors are part of the Research and Training Center on Community Living at the University of Minnesota’s Institute on Community Integration. ICI has been tracking the shortage of professional caregivers for decades, noting it reached crisis stages even before the pandemic. A separate ICI survey of these professionals since the pandemic began found worsening quality of DSPs’ work lives and scant pay increases, exacerbating the difficulties families have in hiring paid staff.

This is the third FINDS study examining the caregiving experiences of people with disabilities and natural caregivers, who are typically parents, siblings, or friends. Previous reports were released in 2010 and 2017. The Arc , a longtime ICI partner, collaborates with the Institute on survey design and distribution, and reviews the findings in the report.

“Managing the complex needs of people with disabilities with little government support and no training has left family caregivers stressed, isolated, and suffering financially,” said Julie Ward, senior executive officer, public policy, for The Arc. “Family caregivers are the backbone of our country’s care infrastructure, doing essential work to ensure people with IDD are treated with dignity, have the freedom of choice, and have good quality of life. It’s work that is unpaid and often unseen, and we hope this survey shines a light on the dire need for federal and state investment in supports and services.”

ICI Director Amy Hewitt said the data across all three surveys demonstrates the ongoing cost-shifting that families have absorbed as more people with IDD live independently in the community instead of in large institutions.

“Family members have paid a steep price for their loved ones with disabilities to live at home, and unlike those who care for aging parents, they typically provide this care for many years,” Hewitt said. “This negatively affects their careers and their long-term savings rates, as well as their own eventual Social Security benefits. As a society, we deemed institutions as unacceptable places for Americans with disabilities to live, but we haven’t provided the means to support their lives in the community by paying professionals acceptable wages to assist working families. And so, it falls to family members to fill the gap.”

In the survey, caregivers reported more difficulties getting respite care, and many who received pay for providing care during the COVID-19 pandemic have now lost that support, Lahti Anderson said.

Among the survey’s other highlights:

• Nearly 70% of family caregivers said the direct support workforce crisis had negatively affected the supports that their family members received.
• More than 80% said they are providing more supports due to the workforce shortage.
• 73% reported their out-of-pocket care costs have increased since the start of the COVID-19 pandemic.
• Half agreed or strongly agreed they were under financial strain due to providing supports.
• 54% reported feeling very or extremely stressed, compared with 48% in 2017.

The report also noted differences across race, ethnicity, and income levels. For example, participants with incomes below $60,000 (47%) reported difficulties paying for supports much more frequently than those in higher-income households (30%). A third of white participants reported that paying for supports was a major problem, compared with nearly or more than half of respondents from other racial and ethnic groups.

From the 2017 survey to the 2023 survey, caregivers reported employers were offering less paid time off and less overall flexibility, though work-from-home options increased.

“Some caregivers are able to work from home, but over time that takes an obvious toll,” Lahti Anderson said.

One family member, a single mother who works as a hospital nurse, shared that when her child’s support staff doesn’t show up for work, there are no other family backup caregivers.

“If she eventually loses her job because of these care situations, what is she going to do?” Lahti Anderson said. “These family members took a substantial amount of time to complete this survey because they want people to know how dire the situation has become. They want to be heard.”