Nine years ago, when I spotted blood in my ejaculate, I made an appointment to see my urologist. I quickly found myself to be the only woman in the waiting room. A handful of men surrounded me, and I could see the gears turning in their heads, wondering why a person who presented as and looked like a woman was waiting alongside them.

“Is your husband in there?” said the man two chairs to my right. As a transgender woman, passing as the gender I align with is one of the most joyous and validating feelings. For those of us who have gone through male puberty with masculinizing factors, aligning our external social presentation with our innermost core identity of gender requires both effort and luck.

If we were not in a doctor’s office, I would have remained sociable and continued the conversation. But here, I tried to avoid it, hoping to prolong the secret that the urology appointment was for me. “No,” I said with a polite smile.

The waiting room brought up all too familiar feelings: anxiety, uncertainty, and the fear of what the remaining men would say or think if I was outed. It also highlighted one of the core tensions in seeking quality health care as a trans person: We need providers to honor our gender identity beyond the simplistic frame of biology while being attentive to biological needs often linked to sex.

As I approached the front desk, a receptionist inquired if I was checking in on behalf of my husband. A second receptionist—the one I had spoken to on the phone to make the appointment—pulled the first to the side and whispered that the appointment was for me, and that I was a transgender woman.

The first receptionist stammered, apologized for the confusion, and handed me a clipboard to fill out my medical details. I sat back down, feeling incredibly self-conscious. Now the entire waiting room likely knew of my situation, that I—like all of them—had a prostate that needed to be examined.

The expectation of rejection and the cost of self-policing has profound effects on transgender lives. We are forced to live a life of vigilance, knowing our gender can shift in the eyes of the public at any moment. This is exhausting, and it can also have devastating health consequences. In a 2020 survey conducted by the Center for American Progress, 28% of transgender respondents said they had postponed or avoided necessary medical care in the past year out of fear of discrimination. Such fear inspires some trans people to cut off their history, drawing a clear line from the moment they transition and choosing to not look back on their “former” lives. But those lives also contain medical history that our bodies can’t discard.

Because of this, doctors’ visits often feel like a forced “outing,” where we have to disclose our history in order to receive an accurate diagnosis. Despite the legal and professional rules that govern medicine, medical professionals are still, in the end, human. Some are accepting and tolerant, others are indifferent and ignorant, and still others are just plain spiteful.

When I had my hip labrum cartilage repaired, I knew the bottom half of my body would be naked on the operating table, which meant my penis would be out in the open for all the doctor’s assistants to see.  The fact that I’d be under anesthesia and unconscious didn’t deter me from making an effort to boldly declare my womanhood while unclothed. I got a pedicure two days before my surgery and picked a bright fuchsia color—the same one I’ve used for over a decade—that I thought might help minimize the chances of being misgendered by the nursing staff as I waited for surgery.

But the day of the procedure, a snobbish blonde nurse looked me dead in the eye and called me “he” as she handed my medical chart over to my surgical coordinator. I made a polite attempt to correct her, but she kept referring to me as “him” and “he” to the other nurses. Finally, the surgical coordinator came to my side, rolled her eyes, and said with a nod: “I know, I know. Just ignore her. She’s just a bitch.”

Tragically, this experience is routine for trans people seeking health care. In a poll conducted by KFF and the Washington Post, 31% of trans adults reported that a health care provider had refused to acknowledge their gender identity, using instead their sex assigned at birth. Health care providers need to acknowledge our core identities even as we need to divulge our raw and tender histories. And precisely because this process can be so excruciating, it is critical for the transgender community—and the medical sectors that support us—to be consistent and precise with our language around gender, sex, and medicine. We must emphasize that being trans is about being seen for who we are as individuals rather than merely our biology, while also advocating for the quality, compassionate health care that our biology might necessitate.

Underlying all of this is the frustrating reality that doctors are fallible and sometimes misinformed, which means we must speak up for ourselves when the situation demands. Infuriatingly, the 2020 Center for American Progress survey found that one in three transgender respondents had to “teach their doctor about transgender people in order to receive appropriate care.” That was the case when I asked my general practitioner for a full panel of STD tests, only for him to ask if I had sex with men.  I was so afraid to come off as double queer—a transgender bisexual woman who had anal sex with men—that I lied and said I only dated women. “You don’t need the HIV panel if you don’t have sex with men,” he said. I was shocked at his ignorance, and to this day regret not speaking up to inform him that the spread of HIV isn’t restricted to anal male-on-male intercourse. I can’t help but wonder how many additional people he misinformed due to my reticence.

I remembered the cost of remaining silent while at a doctor’s visit last summer, when I needed an X-ray. “Are you pregnant?” the nurse asked.

“No,” I replied, “I can’t get pregnant.”

She looked at me with one raised eyebrow. “How old were you when you had your hysterectomy?”

As good as it would have felt to continue to play along as a woman who was born female and had gone through puberty as one, I instead chose discomfort. When I told her I was transgender, she nodded, thanked me for my transparency, and proceeded to strap the lead vest on my chest.  As the X-ray machine began to whirl, I smiled. It took bravery to own that moment of authenticity. But being honest with my nurse translated into better care for myself—and maybe the next patient she works with, too.

The post For Trans People, a Doctor’s Visit Can Be a Dilemma appeared first on Zócalo Public Square.

There are few things in America as universal as contraception. More than 99% of reproductive age women—and by extension, their partners—have used it at some point in their lives, to prevent pregnancy and for a whole range of other health reasons. This is true across religion, geography, age, and sexual orientation or gender identity. If measured by our behavior, contraception is something that we as a country have long agreed is an important and routine part of how we live our lives.

As a social scientist who has spent the past two decades studying how and why people use contraception, my work has been defined by a distinct tension. Slowly and methodically, more contraceptives—designed for more people with various needs and preferences—have become available. But as access to new methods has expanded, so too have the attacks on contraception and related health care. While these attacks are longstanding, today they feel more overt: I’m concerned that contraceptive access in the United States is on a precarious path.

Given the ubiquity with which Americans use contraception, these attacks seem paradoxical. But they are part of a much broader political strategy to limit bodily autonomy.

One consistent theme in my research is that federal and state restrictions that ostensibly target abortion have impacts far beyond abortion access. You cannot seek to restrict or regulate one aspect of sexual and reproductive health without tightening other types of care and people’s overarching reproductive freedoms. This reflects the realities of how people live their lives: It is impossible to silo one aspect of our health from our overall well-being.

The most popular methods of contraception in the U.S. among reproductive-aged women are permanent sterilization (“getting your tubes tied”), the birth control pill, condoms, and intrauterine devices, or IUDs. (While data collection often focuses on contraceptive users who identify as women—including most of the studies referred to in this piece—many users who are not women also rely on contraception.) At the same time, about one-fourth of current and prospective contraceptive users say they would rather be using another (or any) method of contraception. In other words, we know there is often a gap between the contraceptive methods people are using and the methods they wish they could be using. Abortion restrictions, and their numerous ripple effects, may be widening that gap.

When the Supreme Court overturned Roe v. Wade in the Dobbs v. Jackson Women’s Health Organization decision in 2022, there was a direct and immediate impact on abortion access.

Two years later, there’s a growing body of evidence documenting Dobbs’ far-reaching consequences on the delivery of other types of sexual and reproductive health care as well. Patients report lower quality contraceptive care following the decision, meaning their conversations with providers are less likely to specifically address their needs. They’re also having trouble accessing the methods that they want to use, due to insufficient clinic availability and cost, among other barriers. Meanwhile, providers in states with and without abortion bans report increases in patients seeking contraceptive care, and there are documented increases in people receiving long-acting reversible contraceptives, like IUDs and implants, as well as permanent methods of contraception, including vasectomies and tubal ligation. What we still don’t know is whether these changes reflect people’s true preferences or whether they represent constrained choices being made in an environment in which people recognize that their reproductive freedoms are threatened. 

The strategy behind those threats is one we’ve seen before; it mirrors the strategy used by the anti-abortion movement, which chipped away at abortion access piece by piece. These are both part of a campaign targeting bodily autonomy more generally, which includes access to gender affirming and infertility care.

Following the anti-abortion playbook, the campaign against contraception is intentionally aimed at restricting access for certain communities and methods. At the beginning of the summer, there were eight bills proposed in six states that would have limited young people’s access to contraception through requirements around parental consent; while most didn’t make it out of legislatures this year, in Texas and Tennessee, such laws are now in place. Some states are already reducing coverage for contraceptives through public programs like Medicaid, which provide insurance to many people with low incomes. And in states including Oklahoma and Indiana, bills reflect language falsely claiming methods like emergency contraception and IUDs facilitate abortions, despite clear scientific evidence that these methods prevent pregnancy, rather than terminate it. Lawmakers in these and other states are leveraging language in ongoing abortion bans to attempt to restrict these contraceptives.

Each of these individual attacks perpetuates and exacerbates longstanding inequities in who can access their desired contraception and whose reproduction—and health—American society values. In a recent study, we found that young people, sexual and gender minorities, people born outside the U.S., and lower income people were less likely to be using their preferred method of contraception post-Dobbs as compared to their less marginalized counterparts.

We also know that the way people are accessing sexual and reproductive health care is changing dramatically, from clicking through an app on their phones to select their contraception via telehealth to being able to purchase the first-ever over-the-counter birth control pill. But research tracking these changes—which delves into the most intimate aspects of people’s lives—is becoming increasingly challenging to conduct. People understandably worry about how their information is used and who has access to it, concerned that data related to pregnancy and menstruation could be used against them. This could be a harbinger of poorer quality data that, at best, capture only a narrow slice of the population, and, at worst, inaccurately represent people’s lived experiences.

There is no one best method of birth control or one best avenue for getting it. The more options we have and the more ways people have to access them, the closer we’ll get to closing the gap between the contraceptives people are using and those they want to be using. Systems-level solutions—like making sure that all forms of contraception are covered via public and private insurance plans and increasing funding to sexual and reproductive health care programs that center patients’ needs and perspectives—must be a key focus of efforts to close that gap.

Those efforts must also recognize that a threat to one aspect of sexual and reproductive health care is a threat to our entire ability to have autonomy over our bodies and to live the lives that we each desire. As a country, we’ve long shown that using contraception is routine, important, and ubiquitous. But it’s not enough for contraceptive use to be nearly universal. Contraceptive access—to whatever method desired—should be, too.

The post Is Birth Control Under Attack? appeared first on Zócalo Public Square.

In early January 2018, I began to have a recurring dream. I’m sitting comfortably at the kitchen table surrounded by friends, when one of my teeth falls out. I reach up to my mouth and out come two, three more. Then, I run to the mirror, only to find my mouth full of jagged shards where my teeth used to be.

The location and people I’m sitting beside vary, but the outcome is always the same. My permanent teeth lie cupped in my palm like a handful of trail mix.

Tooth loss is a common subject of stress dreams. Dream interpreters and psychologists link it to poor self-image, fear of death, and loss of communication or control. My dream began as I packed up my apartment to move across the country for graduate school. I was afraid that uprooting my life would mean losing the community that defined me. Perhaps teeth had become a stand-in for the life I had built. Without teeth—without community—who would I be?

Both biologically and psychologically, our teeth are us, and they determine our futures. Their shape, layout, and imperfections can identify us, fingerprint-style, and serve as a physical record of our experiences, accumulating distinctive layers in response to life events like incarceration and menopause. Our oral health is inextricably tied to our overall health. How our teeth look can determine our social and economic success, and our self-esteem.

It’s strange, then, that our teeth—the hardest structures in our bodies—are so often neglected, by individuals and society. Indeed, they seem to exemplify and exacerbate all the worst aspects of American healthcare.

That starts with preventive care, or a lack thereof: The American Dental Association’s Health Policy Institute estimates that less than half of Americans visited a dentist in 2021. One reason getting people to the dentist is like pulling teeth is because as a society, we just don’t want to pay for it— just 73% of the U.S. population has dental insurance, millions fewer than the 91% with health insurance. And we don’t trust our dentists. Our anxiety about cleanings and treatments lead to avoidance, which leads to elevated pain, which only compounds the problem.

Poor dental care affects the rest of our bodies, too. Nitrate-reducing bacteria that live on the tongue convert nitrate, a compound in leafy green vegetables, into nitrite, a molecule our bodies use to produce nitric oxide, key to lowering blood pressure. There’s evidence that people with preeclampsia, or pregnancy-induced high blood pressure, have fewer of these nitrate-reducing species on their tongues. Frequent tongue brushing, but not antiseptic mouthwash, increases the abundance of these good bacteria.

Chronic inflammation in the mouth, including from persistent infection of the gums and teeth, can stress the heart and lead to increased risk of clogged arteries and heart attacks. Gum disease-related microbes that enter the bloodstream have been linked to inflammatory diseases like lupus and rheumatoid arthritis.

Tooth decay, lupus, and rheumatoid arthritis are more common among people of color, and lower socioeconomic status has been shown to correlate with worse treatment outcomes. The ways we care for our mouths, then, may aggravate existing disparities—and the landscape for dental care is fraught.

According to the CareQuest Institute, a nonprofit aiming to increase equity in dental care, 93% of people living in poverty need dental care they aren’t getting. For many, it’s simply too expensive. A 2022 study from researchers at the American Dental Association found only about a third of dentists treat Medicaid patients. (Dentists are often paid less for treating patients on Medicaid.) In another ADA study, nearly 17% of adults reported that the cost of treatment prevented them from receiving dental care, more than twice the rate reported for other medical treatments. This cost barrier affects more than 1 in 5 Black patients and 1 in 4 Hispanic patients.

Unless something changes, these broad health disparities seem likely to get worse.

Dental science is advancing rapidly—with researchers testing gene therapy strategies to regrow teeth in humans and attempting to transplant oral microbiomes to cure infections—but it won’t deliver itself to patients. Manufacturers first introduced sealants—plastic coatings dentists apply to the grooves of the teeth to prevent cavities—in 1967. These treatments are effective; for children with a history of aggressive cavities, who are at higher risk for infection and tooth pain and extraction, they could be a particularly promising solution. But insurance often doesn’t cover sealants, so they don’t get used.

Many patients remain wary of dentists trying to upsell them. Some researchers have argued that implementing so-called value-based care in dentistry, rather than a fee-for-service model, will be a critical first step in getting people into the clinic willingly. The existing fee-for-service reimbursement means dentists don’t get paid for maintaining health but for fixing problems. It incentivizes surgical procedures over preventing cavities and bolsters the perception that dentists’ goal is to sell us something. Value-based care proponents also aim to build patient trust by actively involving patients in decision-making and, critically, considering how oral health is interrelated with overall health.

The four and a half years following my recurring nightmares were, ironically, the longest I’ve ever gone without seeing a dentist. While I visited the student health clinic for primary care check-ups, they didn’t do dental, and the idea of hunting for a dentist that would accept my insurance as I juggled classes and research for my PhD was daunting. The few clinics I called in those years never got back to me. Talking to my classmates, it’s clear that’s true of many in my community—and we’re some of the lucky ones. Graduate students in STEM fields typically receive higher stipends than students in the humanities, though many are still rent-burdened and without the disposable income to pay for expensive dental procedures. I’m lucky enough to have dental insurance, but across universities and graduate programs, dental coverage is not a given.

Now, at the cusp of graduating and facing the stress of changing communities once again, I’m daydreaming not of tooth loss but of regrowth. Changes to our oral health don’t need to have endless ripple effects on our appearance, identity, and overall health. Instead, maybe we can design a healthcare system that we can all trust to keep us healthy from the mouth down.

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The most important healthcare workers in this country—entry-level workers who do the caregiving and provide preventive services—are often paid poverty-level wages and provided insufficient benefits and supports, said panelists at a Fresno event in the statewide Zócalo Public Square series, “What Is a Good Job Now?”

As a result, the panelists said, there aren’t enough such workers. So, improving health care should start with improving caregiving and other entry-level health care jobs—with higher wages, better benefits like paid leave and health insurance, and career pathways that allow nurse assistants, for example, to become registered nurses.

“A lot of jobs are invisible in our health care system, even though they are very important,” said University of Minnesota health policy and management scholar Janette Dill, who studies the public health workforce. What undervalued jobs like home health care aides or nursing assistants have in common is that most of the workers are women of color, or immigrant women, she added.

“It really speaks to the fact that women’s labor is undervalued in our society,” Dill said.

The event, presented in partnership with the James Irvine Foundation and focused on healthcare, was moderated by Cresencio Rodriguez-Delgado, news director of KVPR (Valley Public Radio). It took place at the Fresno Center, a multi-faceted community service space on the south side of Fresno.

He began by asking panelist Helda Pinzón-Perez, a Fresno State public health professor with expertise in the health issues of rural areas and vulnerable populations, to define the problem with health care jobs.

Pinzón-Perez answered that California and the country badly need more health workers for three reasons. Our aging population needs more care. Rural and underserved communities lack providers. And we all need more preventive care, and caregiving and health education.

But we can’t get more health workers if we’re not willing to make those jobs more appealing to workers.

Asked by Rodriguez-Delgado about what her Fresno State students who are going to health want from their jobs, Pinzón-Perez emphasized that they have many desires and expectations. Among them are competitive salaries, the chance to grow in their careers, and enough free time to attend to their families and their own health.

And most of all, she added, “they are also looking for opportunities to apply what they learn to serve the community.”

A frontline caregiver on the panel, Martha Valladarez, noted that she hadn’t pursued the job. Instead, after years as one of Fresno’s first female letter carriers, she became an in-home supportive services provider to care for her youngest daughter, who has Down Syndrome.

She said she had received no training in caregiving upon taking the job. And she expressed frustrations with its pay—getting a raise required nine years of lobbying Fresno County. And it has been a struggle to secure vital benefits, around leave and retirement. To advocate for herself and other caregivers, Valladarez joined the union, SEIU, that represents in-home supportive service workers.

“We deserve a lot more and we’re going to fight,” she said.

She strongly backed state legislation to raise the minimum wage of healthcare workers to $25 per hour. But she also said that a big issue is that caregivers aren’t paid for all the hours they work—because it’s hard to say no to the people you care for. “This is a job where everyone knows you’re not going to leave,” she said.

Dill, the University of Minnesota scholar of health policy and workforce, emphasized the high stakes of improving health care jobs. The health sector is now the largest employer in the country; health care has transformed distressed manufacturing economies in the Rust Belt and other American places.

But those workers often have to work more than one job because they don’t get full-time hours, or health insurance of their own. They don’t have schedules that allow for respites or breaks that are vital for their mental health, she said. And health care jobs have physical demands that can make them quite dangerous; nursing assistants, she said, have relatively high rates of occupational injuries and infections.

Illustration by Soobin Kim.

Near the end of the conversation, panelists took questions from the audience attending in-person at the Fresno Center.

Rodriguez-Delgado, the moderator, talked about the closure late last year of Madera Community Hospital, in the community to the north of Fresno. “That probably sent signals to people who want to go into health care that it seems unstable,” he said.

In response, Dill noted that hospital closures and the failures to invest in health care personnel are often a function of choices made by “payers”—insurance companies, that tend to value fancy care more than daily hands-on care.

Pinzón-Perez said that mental health care for everyone, including front-line health workers, is important, and more might be done with the evolution of telehealth. Healthcare workers also need to do more work and tasks that are rewarding and seem meaningful, she said.

Pinzón-Perez and Dill both said that there had been an exodus of entry-level health care workers since the pandemic, with higher salaries being offered in other sectors. Those departures have made workloads even more intense in healthcare, Dill said.

Pinzon-Perez, an immigrant from Colombia, said that one way to produce more health workers is to utilize more immigrants who arrive in the U.S. with medical training.

Dill said that extensive data research shows that union membership can also improve the pay of health workers. She added that public policies—including minimum wages, paid leave, and health insurance—can “create better jobs in the lowest levels of the health care sectors.”

And she said there need to be pathways for greater mobility for workers, so they can rise to better-paying job categories.

“A nursing assistant is poverty wages and an RN is middle class in the U.S.,” she said. “Helping people make that transition through the health care sector is one powerful way we can promote social justice.”

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In March 2020, when Congress enacted the country’s first-ever federal paid sick time and child care leave policy, it carved millions of people out of the law’s guarantees, including one group that the nation was simultaneously hailing as heroes: health care workers.

The law, which was in place from April to December 2020, provided eligible workers up to 80 hours of paid sick leave to address COVID, and 10 additional weeks of child care leave for COVID-related interruptions. The law excluded large companies and their employees, and had rules that allowed very small companies to deny child care leave to their workers. An additional carveout for health care workers and first responders meant that an employer could claim hardship and deny a request for sick leave or child care leave, without any proof required.

This exemption sent the message that health care workers were so “essential” that they could be forced to care for others even when they and their families had needs of their own.

Even before COVID-19, turnover in the health care workforce was a concern. During the pandemic, the stress on health care workers, especially women, was profound. After COVID, substantial shares of workers reported burnout and said they were considering leaving the health care profession—and women were more likely than men to say they might find other work.

Now, the United States is in the midst of a health care workforce crisis, caused in part by the inability of nurses, physicians, and other caregivers to care for themselves and their families. The stability and quality of the health care sector, which is overwhelmingly comprised of women workers, and the country, depends on addressing this challenge.

There is no silver bullet that can create better quality jobs across the entire health care industry, but public investments in child care, higher wages for the lowest paid workers, and paid leave for all would go a long way—and would even contribute to economic growth in the process.

Child care for health care workers is a major issue—more than in other sectors because of the disproportionate shareof family caregiving that women do. A 2022 study of nurses and teachers found that 11 percent of workers reported that child care issues affected their ability to work compared to 6 percent of workers in other industries. Women nurses and teachers were 54 percent more likely than men to report that child care affected their ability to work.

On-site child care—with hours that reflect the long, irregular shifts that nurses and other health care workers must work—is one solution. But on-site child care arrangements can be tenuous. Earlier this year, a major health care center in Nebraska announced it would close its child care center, causing concerns that the shutdown would further exacerbate worker shortages.

And not all health care workers work in a facility that can support a child care center, or work in a facility at all. Which is why creating universal access to high-quality, affordable child care, and improving the quality of child care jobs is so critical.

Fair, family-supporting wages are also important, and workers in direct care jobs, like personal care and home health aides, face particular precarity. Those who work full-time receive average wages of just over $600 per week, or just over $15 per hour for 40 hours per week of work. Immigrant, Black, Latine, and Asian workers comprise substantial shares of this workforce, and often face circumstances at home and on the job that are more difficult than those of white workers. Workers who cannot afford to support themselves and their families—much less pay others to care for their families while they, in turn, care for others—are more likely to leave the field entirely, causing care challenges for family members who need to work and care gaps for patients.

Direct care workers, like millions of other U.S. workers, also often have both children and older adults or loved ones with disabilities to care for. Yet they are extremely unlikely to have paid sick time or paid family and medical leaveunless they live in one of the minority of states that guarantees one or both of these policies. And even if they are in the right state, they may not get paid sick time or paid leave because of eligibility rules.

Creating national paid sick time,  as well as paid family and medical leave programs for all working people, could provide the scaffolding on which the medical profession could build.

Paid leave policies are also essential for patients and their families, covering time they need away from work to deal with their health (an argument the American Academy of Pediatrics has made to federal lawmakers). Physicians would also benefit from these programs. While they have more access to paid and unpaid leave, they face often unreasonable expectations about training, hours, and shifts that make work and family incompatible. Women now represent more than half of medical school students but they make up just 37 percent of active physicians in the United States.

A recent American Board of Medical Specialties policy offering parental leave to medical residents is a good start. But these leaves are relatively short, may be unpaid, and do not extend to other family caregiving needs. Access to and utilization of leave by female and male physicians are uneven nationwide due to both policy gaps and cultural professional norms.

Family-friendly job schedules, flexible work, job-sharing arrangements, and access to child and elder care—on a gender-equal basis—are also important in order to mitigate bias and encourage the use of these arrangements.

A vibrant, healthy, and well-supported health care workforce is in everyone’s interest. At some point, we all need emergency care, preventive care, or assistance with ongoing or serious acute conditions, and health professionals are our first call. Communities, businesses, and the economy also benefit when we are all healthy.

Those who care for us deserve to be able to manage their personal and professional lives with dignity because essential health care workers are human. Practices and policies must reflect and honor their humanity.

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As one of the over 550,000 caregivers in the state’s In-Home Supportive Services (IHSS) programs, I am part of a big system that keeps 650,000 disabled, blind, or elderly Californians in their own homes, and out of nursing or board-and-care facilities.

But when I go to work around my hometown of Fresno in the houses, trailers, and apartments of these Californians, I often feel alone.

Sometimes, I think this is the worst job I’ve ever had.

That’s saying something because I’ve been working since age 13, almost always taking care of others. Most of my experience involves working in and directing child care facilities and after-school programs. I’ve also worked in group homes for foster kids and in teen suicide prevention programs.

Back in 2006, I was working 80 hours a week in two jobs, and taking home about $60,000 a year. But then the Great Recession came, ending both jobs. I was on unemployment for a while.

Then, my mother got Alzheimer’s.

That was my introduction to IHSS. Many of the caregivers who work through the program are taking care of relatives. My mother applied to receive care from IHSS, and I became one of them.

Here is how the program is supposed to work. A person having difficulty living independently submits an application, then receives a visit from a social worker, who determines what services they need (among them: bathing, bowel and bladder care, grooming, dressing, housework, meal prep, and trips to the grocery store). The social worker also determines how many hours of service they are entitled to receive—the max is 283 hours a month (a little more than 40 hours per week). Once a person is approved to receive caregiving, that person becomes the client, and thus the boss of the caregiver.

And that relationship is often difficult and complicated.

For starters, caregiving for IHSS is a minimum wage job. When I started back in 2011, I received just $8 per hour. That went up to $9 per hour in 2014 and $10 in 2016; today we caregivers earn $15.50 per hour. The social worker gave my mother five-and-a-half hours of caregiving a day.

In reality, I was working 24/7.

It was heart-breaking work. By the time I started getting paid to take care of her, she didn’t know who I was. As the disease progressed, she grew harder to manage—showers were very difficult. She’d pick up things off the floor and eat them. She’d try to run away. Fortunately, the neighbors would stop her if she got out the door.

After she went into a nursing home, in 2018, I took on new clients, whose friends or family knew me, and requested that I take care of their loved ones.

Each situation is challenging in a different way.

Getting paid for the hours you work is nearly impossible, especially when the person has Alzheimer’s or dementia and can’t fill out the time card herself. I once worked 79 hours over two weeks for one client, but relatives, who had her in a conservatorship, signed the card so that I only got paid for 40 hours. In that case, I was supposed to help with cleaning, but the client had no soap or detergent. I had to pay for supplies myself. She also wasn’t sleeping in a bed because she couldn’t assemble it. I had my husband come over and set it up, so she would sleep better.

I brush people’s teeth and spend hours getting them to take their pills. Another approved duty is taking clients to doctor’s appointments. That can take a lot of time—many of my clients are on the south side of Fresno, but the doctors are usually in the north, which means long, slow bus rides with people who need constant monitoring.

Clients also ask for help with tasks that the IHSS social worker hasn’t approved—and it’s hard to say no. I would be on my feet four hours a day with one client who was constantly having me take her to the mall to go shopping, spending away her savings.

The other tricky dynamic is that not all clients live alone. I worked for one elderly man who had a disabled son, and I ended up helping them both.

In many cases, clients are living with friends and family who insist that I do extra work for them, too. I often am treated like the maid. In one situation, my client was living with a relative who was out in the streets constantly and around people. This was during COVID—we were essential workers, and so we had to keep working despite the risks. But, eventually, I insisted that I would clean only one bathroom—the one used by the client—in their trailer and not the second bathroom used by the client’s relative.

Sometimes, I feel vulnerable. I had one client who was a heroin addict and living with a relative who was also an addict. I had another client who was schizophrenic; on errands, I had to fend off men who would try to get her contact information, with the clear purpose of robbing her or otherwise taking advantage.

If I run into these kinds of trouble, there’s not really anyone I can call for help. My only option is to leave that assignment; that means giving up my paycheck until I find a new client, which can take some time. IHSS has tried to solve this problem by having social workers come back for follow-up visits once a year. But once a year isn’t enough supervision to work.

To try to solve some of the problems, I’ve been working as an organizer with my SEIU local, the union that represents IHSS workers. I sign up members and advocate for caregivers to get more hours, to be paid properly, and to be treated better. We also have a number of caregivers who aren’t getting sick leave. And many caregivers don’t have health insurance; I’m fortunate to be on the insurance of my husband, a retired sheet metal worker.

I’d love to retire, but we need the cash, even though it’s just $700 every two weeks. I also do some online sales to boost the family income, and pay my son’s phone bill.

The best hope for caregivers right now is state legislation to raise the minimum wage for all health workers to $25 per hour. With that pay, we caregivers would have more time with our families, and afford to pay bills on time—plus go to the grocery store more, and to the food bank less.

Of course, $25 per hour can’t solve everything. But it would make this job, one of the toughest and worst-paying you will find, a little bit better.

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