Massachusetts Institute of Technology: Envisioning new financing models to mitigate the crisis in long-term care

As the U.S. aging population rapidly grows, there remains a severe shortage of care workers and personal assistants for older adults and people with disabilities despite a surplus of unfilled jobs. Low pay, lack of basic benefits, and the paucity of opportunities for growth have resulted in a huge turnover in the long-term services and supports (LTSS) industry. Massachusetts, for example, experienced a care worker staffing crisis even before the pandemic, and a staffing exodus continues in the care workforce. Earlier this year at Brigham and Women’s and Massachusetts General hospitals, 20-30 percent of beds were occupied by patients who needed to be discharged but were struggling to find a setting to receive long-term care and recover from their injuries or illnesses; at Tufts Medical Center it was typical to have 20-30 patients a day who would have been released if a nursing home or home health-care services were available.

Historically, women of color, who make up the majority of workers in the care industry, do not receive the pay, benefits, or respect that adequately reflect the essential and valuable nature of the job they provide. Despite stepping up as front-line workers during the pandemic, the nationwide median pay for certified nursing assistants in 2021 was $14.56 an hour, according to the according to the Bureau of Labor Statistics. Earlier this summer, a new contract created a pathway for 58,000 personal care attendants in Massachusetts to receive $18 per hour starting in April 2023. These personal care assistants provide services to over 1 million seniors and approximately 500,000 adults living with disabilities in Massachusetts.

While states such as Massachusetts have made some inroads to mitigate the crisis by increasing wages, the pandemic has made evident that the LTSS system in the United States is broken and requires systematic change. Currently, it does not sufficiently value workers, family caregivers, or people receiving services and support. In turn, this perpetuates and expands the existing racial, gender, and disability inequities in our society. “The institution of urban planning was part of creating the racial disparities that plague all of us everywhere, including in the long-term care sector. Thus, we are utilizing the lead planning program in the country, DUSP at MIT, to address it,” said Holly Harriel, lecturer of planning practice at MIT’s Department of Urban Studies and Planning (DUSP).

In an effort to address these concerns, Mel King Community Fellows from the MIT Community Innovators Lab (CoLab) within DUSP have been working to mitigate the national crisis in long-term care by envisioning new financing models. Among their activities to support this mission are new research on the LTSS industry and, most recently, a trip to Germany to study the German LTSS system.

The Mel King Fellowship brings together community leaders and DUSP faculty and students to think and act collectively to solve major national problems. Over the past decades, the fellows have come from various sectors and fields and were selected for their visionary leadership and ability to transform cities and industries by empowering communities. The 2022-23 Mel King Fellowship cohort is composed of finance leaders as well as labor leaders and community advocates representing hundreds of thousands of workers and millions of consumers in the care industry, respectively. The fellowship provides research capacity, facilitation, and learning exchange opportunities to support leaders in the care sector to develop and implement new financing models for long-term care.

Current Mel King Fellows are focused on a broad and deep new vision for LTSS financing. The fellows have envisioned what’s possible on multiple levels by focusing on how to build worker-owned co-ops that support quality of care and quality jobs and are exploring how to build new LTSS financing programs that create a more equitable system that supports community wealth-building and addresses the care crisis in the sector.

The fellowship has produced three papers and convened three virtual events focused on LTSS domestically and internationally. The first in-person convening of the fellowship took place in June in Berlin, Germany, and was attended by the community fellows, MIT DUSP faculty and staff, and masters of city planning students. At the convening, the fellows, faculty, and students delved into the German LTSS financing system — paid for through a social insurance model — and explored how this system better meets the needs of workers, consumers, and family caregivers. They also explored how aspects of the German model could be implemented in the United States or tailored to fit its unique circumstances. In the process, participants explored what coalitions would be needed to build a new and sustainable system in various states to meet complex state needs.

Simultaneously, the fellows surveyed what would be possible using co-ops to transform how care is delivered across the United States. In seeing German examples of co-ops and speaking with labor counterparts in the country, participants connected how co-ops can be used in different LTSS sectors (home care, consumer-directed care, and nursing homes) to better value workers and support older adults and people with disabilities. As a result of the trip, the fellows are scaling up co-ops in LTSS and securing funding for alternative co-op models in the LTSS sector.

Deeply committed to creating a more equitable LTSS system, the fellows are currently developing prototypes that will offer solutions across various states and will deliver their change-making projects at the next convening, which will take place at MIT. The fellows share a long-term vision of a system that compensates workers fairly, does not rely heavily on unpaid family caregivers, and enables older adults and people with disabilities to live in dignity and build wealth that accumulates across generations. By creating a more equitable LTSS system, Mel King Fellows at DUSP are working toward a more equitable society that values and dignifies older adults, people with disabilities, and the essential work of their caregivers.