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.

How state governments touch on nearly every aspect of public policy

This week in North Philly Notes, Michelle Atherton, co-editor of Pennsylvania Politics and Policywrites about what states do and how much power they have within modern politics and policy.

In the midst of the modern 24/7 news cycle, and the focus on the tweet of the moment from our president, it’s easy to forget that politics in our federal system runs much deeper than the national level. Americans in general are woefully unaware of what states do and how much power they have within modern politics and policy. Statewide and local elections have much lower voter turnout than presidential years, as if the composition of state legislatures and governors’ offices barely matters compared to who occupies the White House. Many would argue these governing bodies matter even more to the lives of the average citizen, as state governments touch nearly every aspect of public policy.

Pennsylvania Politics and Policy_smRepublicans in control in Washington, DC did not manage to repeal the Affordable Care Act (Obamacare), but it was originally up to the states to create their own healthcare exchanges, and whether to expand Medicaid. The Tax Cuts and Jobs Act passed in 2017 lowered federal taxes for most individuals—and especially corporations—but it also capped the state and local tax (SALT) deduction at $10,000, greatly effecting the calculus of state and local governments’ approaches to maintaining revenues.

Pennsylvania, for example, is one of the states most highly dependent upon property taxes for the support of public schools, collected locally, as opposed to relying on state taxes. Will the wealthy Philadelphia suburbs revolt come November’s general election as higher income households lose thousands of dollars in tax deductions? Perhaps the results will strengthen the case among many voters for doing away with the property tax altogether as a source of funding for public schools in the Commonwealth.

This issue and many others are explored in the first publication of Pennsylvania Politics and Policy: A Commonwealth Reader. Further topics include:

  • What would it mean for Pennsylvania to adopt direct democracy such as the citizen-initiated referendum and recall like other states? Would politicians be more responsive and less prone to corruption?
  • Why doesn’t the state of Pennsylvania place a severance tax on natural gas production? Every other state does. Alaskans each receive a dividend from fossil fuel extraction, yet Pennsylvania’s legislature refuses to move the issue forward even in the face of severe budget woes.
  • Why doesn’t the state fund education based on the number of students in schools? Every other state in the nation bases funding on real student counts. In Pennsylvania, the politics of party and leadership control in the legislature dictates funding.
  • Why does Pennsylvania not tax any form of retirement income, one of just a handful of states to do so? And, what does the rapid aging of the state mean for the bottom line of funding services both for the elderly and younger individuals and families?
  • Why did it take so long to be able to buy wine and beer at the local supermarket? Pennsylvania took a unique approach to policing vice.

Another election for the governor, the entire House, and half the Senate of Pennsylvania is just around the corner. Here’s hoping Pennsylvanians find their way to the polling place to vote in proportion to the gravity of the election’s policy implications.

 

Celebrating Banned Book Week

This week in North Philly Notes, for Banned Book Week, we blog about Prison Masculinities, edited by Don Sabo, Terry A. Kupers, and Willie London. A passage on prisoner rape prompted the entire state of Texas’ prison system to ban the book!

 

 From the Texas Civil Rights Project 2011 Human Rights Report:

Prison Masculinities, edited by Dr. Terry Kupers, M.D., Don Sabo, and Willie London, is banned because passages on pages 128-131 discuss prisoner rape. A prisoner describes how he was “humiliated telling anyone about” being sexually assaulted, and how he underwent “torture scenes” at the hands of fellow prisoners. TDCJ officials have testified they would even censor government documents that discuss prison rape. 

The book’s editor, Dr. Kupers, an expert in prison mental health care, included the passage as an “illustrat[ion of] the kind of prisoner orientation and education that is mandated by federal law – i.e. the Prison Rape Elimination Act signed into law by President [George W.] Bush in 2003.” According to Dr. Kupers, “the material in Prison Masculinities is designed to facilitate peaceful, smooth operations of the prisons and contribute to the rehabilitation of prisoners.”

About the book:

Prison Masculinities explores the frightening ways our prisons mirror the worst aspects of society-wide gender relations. It is part of the growing research on men and masculinities. The collection is unusual in that it combines contributions from activists, academics, and prisoners.

The opening section, which features an essay by Angela Davis, focuses on the historical roots of the prison system, cultural practices surrounding gender and punishment, and the current expansion of corrections into the “prison-industrial complex.”

prison masculinitiesThe next section examines the dominant or subservient roles that men play in prison and the connections between this hierarchy and male violence. Another section looks at the spectrum of intimate relationships behind bars, from rape to friendship, and another at physical and mental health.

The last section is about efforts to reform prisons and prison masculinities, including support groups for men. It features an essay about prospects for post-release success in the community written by a man who, after doing time in Soledad and San Quentin, went on to get a doctorate in counseling.

The contributions from prisoners include an essay on enforced celibacy by Mumia Abu-Jamal, as well as fiction and poetry on prison health policy, violence, and intimacy. The creative contributions were selected from the more than 200 submissions received from prisoners.

About the Editors:

Don Sabo, Professor of Social Sciences at D’Youville College in Buffalo, is author or editor of five books, most recently, with David Gordon, Men’s Health and Illness: Gender, Power, and the Body and, with Michael Messner, Sex, Violence, and Power in Sports: Rethinking Masculinity. Sabo has appeared on The Today Show, Oprah, and Donahue.

Terry A. Kupers, M.D., a psychiatrist, teaches at the Wright Institute in Berkeley. He is the author of four books, editor of a fifth. His latest books are Prison Madness: The Mental Health Crisis Behind Bars and What We Must Do About It and Revisioning Men’s Lives: Gender, Intimacy, and Power. Kupers has served as an expert witness in more than a dozen cases on conditions of confinement and mental health services.

Willie London, a published poet, is General Editor of the prison publication Elite Expressions. He is currently an inmate at Eastern Corrections. For nine years he was a prisoner at Attica.

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