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.

Religion and politics mix – what matters is how they mix

This week in North Philly Notes, L. Felipe Mantilla, author of How Political Parties Mobilize Religion, writes about the rise of religious political parties.

A glance at global headlines suggests that religion is playing an ever-growing role in electoral politics. Islamist parties have become fixtures in Muslim-majority countries from Morocco to Indonesia, conservative Catholics are entrenched in Poland, Evangelicals flex their political muscles in Brazil, and Hindu nationalists are dominant across much of India. In all these settings, secularists often express fear that the political success of religious groups will threaten democratic institutions and endanger minorities.

My new book, How Political Parties Mobilize Religion: Lessons from Mexico and Turkey, aims to bring some nuance to the debates prompted by the rise of religious political parties. One of its main arguments is that religion often enters the electoral arena, but that it can do so in strikingly different ways. Religious mobilization by political parties is not monolithic, and secular laws and religious leaders can have a great deal of influence on how religious parties behave in practice.

In the United States, for example, the idea of a clear separation between church and state is embedded in American political tradition. Yet religion and partisanship are clearly intertwined. Candidates often speak publicly about faith, craft appeal to religious voters, and place their personal beliefs on public display. While churches risk losing their tax-exempt status if they engage in explicitly partisan activities, these restrictions are widely disregarded in practice. Given electoral laws that favor a two-party system, religious activists operate within broader coalitions rather than form their own party organizations. As a result, both Democrats and Republicans engage in religious mobilization.

Still, there is a great deal of diversity in how political parties engage with religion. Consider the contrast between the religious services attended by Donald Trump and Joseph Biden on the eve of the 2020 election. Biden sat at a pew in St. Joseph on the Brandywine Catholic Church and was treated like a regular parishioner; his presence was not mentioned in the sermon. Trump, attending an evangelical congregation in Las Vegas, was repeatedly praised and blessed, declared to be “lighting a bright light for God and for all those who believe in a good America, a noble America, a righteous America,” and was invited to speak to the congregation.

In my book, I argue that much of this difference can be explained by the contrasting patterns of religious organization among Evangelicals and Catholics. Individual leaders of Evangelical churches can benefit from the fervor and national visibility that brazen partisanship brings, even if their stances alienate most Americans and potentially antagonize elected officials. In contrast, the contemporary Catholic Church is a hierarchical, transnational organization, and as such is more wary of the potential costs of partisanship. Gaining a thousand devout converts by antagonizing millions is fine, perhaps even smart, if you are running a local church but makes little sense if you are leading a world religion.

These differences are not unique to the United States. In Peru’s recent elections, the absence of effective legal restrictions on religious partisanship created an opening for religious political mobilization. In that Catholic-majority country, it led some lay Catholics to launch campaigns based on appeals to religious values and identities. However, Catholic leaders largely withheld their blessing, preferring to make broad statements about the importance of electoral participation. In contrast, many clerics linked with Peru’s rapidly growing Evangelical minority engaged in openly partisan activities, such as praying with specific candidates and organizing events on their behalf.

My book also shows that changes in the rules and regulations governing elections can affect the mobilizing strategies used by religious parties. In 1950s Mexico, electoral rules that disadvantaged opposition parties drove away all but the most committed activists, many of whom were devout Catholics. This left opposition parties dependent on religious activists. As legal reforms gradually made it easier for challengers to gain seats, they began to attract more diverse supporters and the relative influence of religious activists waned. In Turkey in the 1970s, electoral laws gave a competitive edge to small parties. Religious activists took note and formed specialized organizations that catered exclusively to devout voters. However, when constitutional reforms made it harder for these organizations to gain seats in parliament, religious politicians reorganized and moderated their policy proposals to appeal to more mainstream voters. In both cases, religious activists responded strategically to incentives created by electoral laws.

In other words, it makes little sense to support or condemn religious political engagement in general. In democratic settings, religion and political parties are bound to interact. What matters is how political parties engage with religion, and that is something that can be shaped by legal reforms and religious leadership.

The News of New York City’s Death is Greatly Exaggerated

This week in North Philly Notes, Francois Pierre-Louis Jr. and Michael Alan Krasner, two of the coauthors of Immigrant Crossroads, write about immigrant groups in Queens, New York.

Since the advent of COVID-19 and the exodus of affluent New Yorkers to the suburbs, some people have predicted that New York will no longer be the city that never sleeps. Our book Immigrant Crossroads has shown the contrary, documenting and analyzing the many fascinating dynamics of community and political activism in this unique borough.

For immigrant families that had endured the four years of the Trump administration living away from their loved ones, the Biden presidency brings new hope and renewed optimism that what Queens was already showing to America will continue. That the vibrant growth exemplified by the borough of Queens and temporarily impeded will flourish again.

Since the 1990s Queens has become the urban epicenter for contemporary immigration—a place that boasts immigrants from 140 countries. While Manhattan drew millions of tourists and mega-rich condo buyers, the city’s four other Boroughs saw the influx of working- and middle-class newcomers from every continent. Places that used to be unattractive to developers and commercial interests suddenly became prime real estate and desired places for immigrants and the middle class to live. Queens led the way in this transformation from being an enclave dominated by the white working class to being perhaps the most diverse aggregation of human beings on the planet. Queens has become an epicenter of  immigrant striving, and activism, presenting an alternative to the nativist vision pursued by Trump’s  propagandists and enforcers.

Hollowed out by white flight, in the 1980s and 90s, New York City’s outer Boroughs have been revitalized with the influx of new immigrants from Asia, Latin America, Caribbean and Africa. Neighborhoods such as Flushing, Bayside, and Laurelton have emerged as the epicenter of New York City’s Asian American community. Within a decade, Flushing has become one of the city’s major commercial and banking center for the Asian community. Corona and Jackson Heights became destinations for those from Latin America, and Astoria became the home for Russians and Eastern Europeans and those from the Middle East. All across the borough of Queens, immigrants remade blighted neighborhoods into thriving communities.

As major economic developments took place, new forms of immigrant activism emerged in Queens’ other neighborhoods, a process that is remaking the social, cultural, economic, and political fabric of the city. Take the case of Corona, East Elmhurst, Jackson Heights, and Flushing where seventy-five percent of the residents are people of color. When the City announced in 2012, that it would give away portions of Flushing Meadows Park to private developers as a way to revitalize the local economy, a coalition of community-based groups and faith-based organizations created the Fairness Coalition of Queens to fight the Bloomberg administration’s economic development agenda. Forcing the cancellation of a sterile soccer stadium and other mega projects, the Fairness Coalition asserted its own power and priorities to call attention to the need for affordable housing and the checking of rampant  gentrification.

A similar pattern has developed in national immigration politics. Drawing on a heavily foreign-born population (One-in-two residents in Queens are foreign-born, ranking it second in the nation for percentage of foreign-born residents), activist Dreamer organizations have lobbied successfully for state legislation and led the fight for similar action from the federal government. Among the first set of actions by the Biden Administration are a rash of executive orders and a far-reaching legislative proposal to not only undo Trump’s harsh anti-immigrant policies but to usher in human pathways to immigrant inclusion.

Pioneering efforts on health care accessibility, an issue made salient by the Covid crisis also began in Queens where two city-wide immigrant advocacy organizations successfully organized to pass the Language Access in Pharmacies Act in 2009 and in 2012 mandating pharmacies provide comprehensive translation and interpretation services to patients with limited English proficiency.

As these examples suggest, the true impact of the recent surge of new immigrant groups is complex, contradicting partisan stereotypes and xenophobic pandering. Serious scholarship from varied disciplines reveals the richly textured contributions that resurgent nativism has sought to obliterate. Our volume demonstrates that being an Immigrant Crossroads has led New York City to flourish and suggests a path that the entire country would do well to consider following to revive the national motto, “Out of many, one.”

Labor unions and national reform

This week in North Philly Notes, Dominic Wells, author of From Collective Bargaining to Collective Begging, considers how labor unions will fare under President Biden.

Labor unions have been on a steady decline for decades, but with the Biden administration there is a renewed hope in the labor movement for a reverse of the trend. Joe Biden has promised to be a pro-union president, proposing to strengthen the right to organize and to hold employers accountable for violating labor laws. 

Although there is no doubt a Biden administration is good news for organized labor, there is good reason to question whether Biden’s pro-labor agenda will come into fruition. Democrats have been promising to protect collective bargaining without delivering on those promises for years. While in office, President Barack Obama promised to join the picket line if American workers were being denied their rights, but when historically pro-union states in the Midwest began stripping away collective bargaining rights, Obama left his picket sign in his closet. 

The strength of organized labor today is in the public sector, which is largely governed by state legislation. In my book, From Collective Bargaining to Collective Begging, I analyze the expansion and restriction of collective bargaining rights for public employees from 1960 into the 2010s. I show that there was a time when republicans, at least at the state-level, viewed collective bargaining in the public sector as a legitimate practice. Faced with consistent strike activity from public employees, republican governors and state legislatures were willing to support collective bargaining. Pressure from unions and provisions that prohibited striking helped make collective bargaining legislation bipartisan in many states. 

By the 2010s, bipartisan support for labor unions was nearly nonexistent. Republican state legislatures, with the help of model legislation from the American Legislative Exchange Council (ALEC), led efforts to weaken public employee unions. In From Collective Bargaining to Collective Begging, I analyze two of the most high profile cases in stripping away the rights of public employees, Ohio Senate Bill 5 and Wisconsin Act 10. These cases demonstrate how labor unions can be successful (or unsuccessful) in protecting their rights and the Ohio case shows that, though unlikely, a bipartisan coalition to protect collective bargaining is still possible. 

Victories for labor unions in the 21st Century have mostly equated to protecting their own existence. There have been few legislative victories expanding rights in recent years. One of the rare successes for organized labor was in Nevada, where rights were extended to state employees in 2019. Outside of formal bargaining rights, teacher unions won raises and other favorable legislation following strike efforts in West Virginia, Arizona, and Colorado in 2018.    

A Biden administration is certainly better for organized labor than the Trump administration, in the public sector and private sector. It means labor unions will have a seat at the table again. It means a more labor friendly National Labor Relations Board. It means there will not be a national right-to-work law. However, if history is any indication, it is unlikely that there will be any national legislation expanding collective bargaining and the right to organize. These battles will likely continue to be fought in state legislatures. Biden is proposing federal guarantees to the right to bargain for teachers, firefighters, and police officers, but his administration and the new Democratic Party controlled Congress will be focused on the public health crisis at the start of his term. If major labor reforms at the national-level are going to happen, they will need to happen in the first two years before Democrats likely lose their slim majorities in at least one chamber of Congress. There is reason for members of the labor movement to be hopeful for national reform, but as a member of a public employee union myself, I will not be holding my breath. 

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