Independent living requires many steps to address our care crisis

Editor’s note: Minnesota recently sent 27 people from four Minnesota centers for independent living and the Disability Law Center at […]

A nurses hands holding a patients hands

Editor’s note: Minnesota recently sent 27 people from four Minnesota centers for independent living and the Disability Law Center at the National Centers for Independent Living conference in Washington, D.C. That was the largest delegation from any state represented at the conference. 

The Minnesota Statewide Independent Living Council (MNSILC) shared position papers with Minnesota’s Congressional delegation. Topics are transportation, broadband and the workforce shortage. Excerpts from the paper on the workforce shortage are printed below. 

Direct care workers are vital to our economy and community as they reduce abuse, injuries, costly hospitalization and institutionalization of people with all types of disabilities, be they direct support professionals, personal care assistants or “home health aides.” 

Hiring care workers has become more challenging due to limited career opportunities for stable living and advancement opportunities in the care industry. Direct support workers have either lived at or below poverty margins due to limited wages and benefits that provide  a respectable quality of life. Nationally, 40 percent of direct care workers live near the poverty line and 43 percent of direct care workers rely on public benefits to get by. Most states pay an average of $14.27 hour with limited benefits when a minimum necessary wage is approximately $22-$25 an hour, not including a decent benefit package to ensure health care coverage, paid time off, sick time, and retirement. 

Turnover rates nationally are between 40-60 percent for direct care workers. Many factors are contributing to significantly high turnover rates including limited supervision, lack of professional development or career growth opportunities, low wages, lack of benefits, and rising inflation/cost of living over the past two decades. Care staff cannot provide quality care when they themselves are underemployed.  

COVID-19 catalyzed a significant exit of the direct care workforce which compounded the previous crisis. Staff are burdened with overtime, at higher risk for infection, and received minimal wages and benefits to support when exposure led illness or injury.

COVID-19 also created additional trauma as patients in congregate care settings at significant risk for infection and died at higher rates than those living in their own homes. In Minnesota, nearly 80 percent of all COVID-19 deaths occurred in residential facilities. With and without the pandemic as a factor, providing cares to persons with disability is often a physically and emotionally demanding job as it requires heavy lifting, long periods of standing, and witnessing trauma which is often associated with discrimination.  

Forecasted need continues to indicate that with an aging population, the recent pandemic and other factors, the United States is looking at an increased service need that more than doubles the current need (cite here). This trend combined with the continued decrease of staffing ratios available is alarming. Without a stable direct care workforce, we are already seeing how this gap places pressure on the health care sector, unemployment and underemployment rates, and an increase of civil rights violations.   

Impacts of the direct workforce shortage include increased rates of hospitalization and nursing home placement: increased cases of neglect and all forms of abuse in group homes and nursing facilities; extended and unnecessary hospitalization; and an increase of people with disabilities unable to living in a setting of their own choice. The latter is a violation of the Olmstead plan. 

Other issues include increased abuse of public guardianship by health care and disability service providers to control placement of persons in most convenient settings; loss of home and employment for people with disabilities; workers living in poverty., and Home and Community-Based Waiver Services in jeopardy.  

Direct care workers are the backbone of Home and Community Based Waiver Services which provides cost effective supports to people with disabilities, and in recent years, to our rapidly growing aging population. For the sustainability of our current system, increasing the strength of our middle class and overall economy, and ensuring equal rights for both the worker and the person with the disability, it is critical at this time to pursue action that will inform policy and reform the gaps in our current system. 

Proposed solutions include increasing research and data responsibilities of states to report individuals in out-of-community placement or at-risk placement due to staffing shortages; and require Administration on Community Living to collect national data on guardianship to collect baseline information and track future trends of quantity, process by state, and potential violations by state. 

We also must negotiate further policy flexibilities with Centers for Medicare and Medicaid (CMS) to support at-risk or institutionalized persons with additional funding or exceptions to support stabilization or return to community. Examples include additional self-directed service options, increasing rates based on time unable to pay staff, and increasing budgets for by region where staffing is more limited (such as rural locations).

Also, increase funding to the Administration on Community Living to supply aging and disability resource centers, areas on aging, centers for independent living and other non-profit organizations to provide informal, open-door supports. Another ask is to require the Department of Justice to report all complaints relating to direct care workforce shortages to Congress. 

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