Direct Support Workers: An Essential Workforce Surviving on Poverty Wages

September 2021

Against the backdrop of a system already stretched thin, the workforce shortage in long term services and supports has become a crisis within a pandemic, leaving disabled and aging people at risk. Aging and disabled people receiving Medicaid funded Home and Community Based Services (HCBS) are people who otherwise meet the standards to be placed into institutional care. The services and supports provided by direct support workers (DSWs) through home and community based programs are what is keeping people out of institutions. Threats to the security of the workforce of direct support workers are threats to the safety, well-being and dignity of aging and disabled people living in their own homes and communities.

The University of Kansas (KU) Center for Research on Aging and Disability Options (CRADO) is currently conducting a study on the impact of the COVID-19 pandemic on HCBS in collaboration with the Topeka Independent Living and Resource Center (TILRC). To date, we have conducted 33 in-depth interviews with HCBS consumers, direct support workers, family caregivers, service providers, and community agencies who support HCBS services across the FE (Frail Elderly), PD (Physical Disabilities), BI (Brain Injury) and IDD (Intellectual and Developmental Disabilities) waiver programs in Kansas. This research is ongoing, with additional interviews and a survey component in progress.

This initial, high level summary both reinforces existing concerns for this workforce, and expands conventional thought on the complexity of the issues aging and disabled people, and their workers, confront in maintaining community based services and supports.

High level summary:

The work is turnkey in supporting aging and disabled people’s lives in the community.

Based on our initial findings, it is already clear that the direct support staffing shortage is a major challenge to receiving and providing quality, safe care during the COVID-19 pandemic. Finding and retaining quality direct support workers is the most frequently cited challenge among consumers, providers, and caregivers so far; and it is also often cited as the most difficult challenge to address. At the same time, good quality workers are frequently cited as the most important resource in the HCBS system, providing essential care that keeps people out of nursing homes.

Despite numerous efforts, consumers and their caregivers struggled to find direct support workers or back-up staff, resulting in unmet care needs. One consumer on the I/DD waiver spoke of going two weeks without a shower when she did not have a backup worker while her staff person was in quarantine. Another consumer, on the BI waiver, required transfer standby assistance while waiting for home modifications but could not find workers. She ended up falling while transferring to the toilet without support, resulting in a concussion thus compounding her original brain injury. She also spoke of food insecurity when she did not have a worker to go to the grocery store for her and home-delivery services were not initially available for SNAP food assistance users. A consumer on the PD waiver had to rely more on aging family members as her care attendants, who were physically unable to assist with transfers and repositioning, as last resort after not being able to find anyone else to hire. In result, her repositioning protocols were not implemented as doctor-ordered and she now has a pressure ulcer. This is a new health condition, not present prior to the pandemic, adding to her already complex