The (real) cost of living with dignity

This week in North Philly Notes, Lisa Iezzoni, author of Making Their Days Happen, writes about the personal and political implications of home-based supportive services and the workforce available to meet this need.

Although it sounds like hyperbole, Nelita kept my friend Michael alive. Michael is completely paralyzed below his neck from primary progressive multiple sclerosis (MS), but he  has a happy life. Because of disability, he had to retire from being a physics professor and lives alone, in a modest home adapted for disability accessibility. Nevertheless, when we met in 2009, his power wheelchair had over 2,500 miles on its odometer, and if the weather cooperated, he spent his days rolling about his community, doing errands, auditing classes at the local university, and taking the train into nearby New York City to visit museums, attend concerts, or ride through Central Park. Michael couldn’t do any of this without Nelita.

Michael needs support for all activities of daily living (ADLs)—feeding, bathing, toileting, dressing, and moving in and out of his wheelchair—and Nelita was his primary personal care assistant (PCA). She arrived every morning at 6:00 am; got him out of bed using his automated, ceiling-mounted lift; assisted him with toileting, showering, and shaving; dressed him; got him set up in his power wheelchair, with its complicated electronics; made and fed him breakfast; and tidied up his bathroom, bedroom, and kitchen before rushing off, with kind parting words, to her second job (a Haitian immigrant, Nelita always juggled two or three jobs). Nelita worked for one of those franchise home-based personal care agencies with a warm and fuzzy name that have sprung up nationwide, and she received a fraction of the hourly fee Michael paid them. When, after several years, Michael’s MS progressed and he needed more PCA hours, he could no longer afford the agency. He finally enrolled in a tightly managed care insurance plan that covered his PCAs, and Nelita changed jobs to stay with him. She—and a team of other PCAs—not only keep Michael alive but support his ability to live his life as he wishes, with dignity.

Nelita, in turn, found her work with Michael personally rewarding. She knew that Michael valued her immeasurably and could not get by without her support. But personal assistance services jobs typically have low wages, meager benefits, scant societal respect, and are viewed as low skilled “women’s work.” However, providing personal care assistance is physically and emotionally demanding and requires navigation of complex and intimate relationships with consumers. It also demands keen observational skills and judgment. PCAs can identify consumers’ new health problems early, thus sometime preventing worsening disease and hospitalization. Nevertheless, by standard metrics, providing personal care assistance—which keeps people with significant disability alive and living with dignity—engenders little dignity for its practitioners, who are predominantly women, people of color, and often immigrants. Immigrants especially risk exploitation from private-pay consumers desperate for ADL supports but unwilling or unable to pay even the routine low wages.

Today, about 17 million Americans living in their homes need assistance with daily activities because of disability. These numbers will grow as baby boomers age. Most people receive assistance from family member or friends. However, as for Michael, when no one is available to provide this support, paid PCAs fill the need. In 2019, approximately 2.3 million workers provided home-based care, broadly defined, and job positions are expected to climb substantially in coming years. But the PCA workforce, with its low wages and high turnover (exacerbated by the COVID-19 pandemic), cannot keep pace with increasing demand.

Much has been written about the impending gap between the need for home-based supportive services and the workforce available to meet this need. Over the last two decades, blue ribbon commissions of experts have convened to discuss this and other imminent crises of long-term services and supports in America. Yet something has been missing from their copious reports and pronouncements: the voices of PCA consumers with significant disability and of PCAs. Also missing were detailed descriptions of exactly how consumers and PCAs approach their intimate interactions in consumers’ bedrooms, bathrooms, kitchens, and behind closed doors, and what dignity looks like day-to-day to consumers and to workers.

A reality in the U.S. is that money is the starting point for achieving the dignity objectives for both PCA consumers and PCAs. Many Americans erroneously believe that Medicare—federal health insurance for older people and former workers under age 65 with disability—pays for in-home ADL supports. It does not, except in narrow circumstances. Many consumers can only obtain the services they need by getting Medicaid (the joint federal-state health insurance program for low-income people), a difficult process with benefits varying widely across states. Even in more generous states, Medicaid budget limitations and complex policies mean that today about 800,000 people are on waiting lists to receive home-based services under Medicaid. President Biden’s Build Back Better plan—passed by the U.S. House of Representatives but currently stalled in the Senate—includes funding to provide in-home supports to older people and people with disability and to increase wages of home care workers. Build Back Better focuses on Medicaid-funded home-based supports, so it will not assist everyone needing these services, but it is a start.

To introduce the missing voices mentioned above, Making Their Days Happen uses interviews of PCA consumers and PCAs to tell their stories, putting these essential ADL support activities into current health and labor policy contexts. It also provides advice for people who might need personal care assistance services for themselves or a family member. Like any intensely intimate human interactions, providing and receiving ADL support can be interpersonally complex. Although PCA consumers and PCAs approach these services from different perspectives, both the benefits and challenges of paid personal care assistance distill down to a single word, dignity. For PCA consumers with significant disability, despite their physical vulnerabilities, dignity means having their wishes respected, all the way from how mundane ADL tasks are performed to supporting their preferences for how they live their lives, participate in community activities, and maximize their quality of life. For PCAs, dignity means societal recognition and respect for the crucial work they perform, plus a living wage, paid sick leave and vacations, safe working conditions, and the training and skills advancement to build a career.