Lately it’s gotten worse. A letter earlier this month made me feel suddenly lightheaded as my vision started to fade. As I sat on the floor, my mind raced through all of the potential bad news the envelope could contain for a disabled Supplemental Security Income recipient like myself.

Many more people could soon be in the same position, more often. A new proposal from the Social Security Administration would cut $2.6 billion dollars over the next decade from the two core programs it runs that comprise the disability safety net: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The cuts would start with letters — 2.6 million more of them.

A letter is the first notice a disabled recipient of SSDI or SSI gets that they’ve been selected by Social Security to undergo a “continuing disability review” (CDR). As the agency puts it, CDRs are used to “determine if disabled beneficiaries still meet the medical requirements for eligibility.” In other words, a CDR is a kind of “are you still disabled enough for SSI or SSDI” audit.

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After the audit, if Social Security believes a beneficiary’s medical condition has improved such that they no longer meet Social Security’s stringent criteria for disability, their benefits are terminated. It is now much easier for Social Security to say that a disabled person has medically improved thanks to a 2017 rule change that allows the agency to disregard medical evidence from a beneficiary’s own doctors. Benefits are also terminated if the disabled person does not respond to the CDR.

The Social Security Administration is proposing a dramatic ramp up in the number of CDRs it conducts, adding an additional 2.6 million of them over the next decade. And that’s not the only change Social Security wants to make to the CDR process.

When an applicant is approved for disability benefits, Social Security assigns them to a category that determines how often they must go through a CDR. If Social Security thinks a disabled person’s medical condition is expected to improve, they set a CDR for every 6 to 18 months. If it’s possible the medical condition will improve, they set a CDR for every three years. And if the person’s medical condition is not expected to improve, they set a CDR for every 5 to 7 years.

Social Security officials want to create a new category, “medical improvement likely,” that will get a CDR every two years. And they propose to move hundreds of thousands of people from less frequent CDR categories into the new category.

The vast majority of disabled people receiving SSDI and SSI are not represented by counsel through the CDR process. The maximum amount that SSI will provide to a disabled beneficiary is just 74 percent of the federal poverty level — currently $12,490 for an individual. As of November 2019, the average SSDI benefit was just $14,855 per year. Most SSDI and SSI beneficiaries simply do not have the money to hire someone to help them navigate the CDR process. Instead, they find themselves facing the byzantine, and all too often hostile, bureaucracy of the Social Security Administration on their own — something that I find daunting even with the benefit of a law degree.

Social Security is also proposing to focus the targeting of those CDRs on disabled children, people with certain medical conditions such as leukemia, and disabled older adults. Under the new rule, many disabled children would face a mandatory CDR at six years old and another mandatory CDR at 12 years old.

In both adults and children, the rule would change the category of certain mental health conditions including anxiety-related disorders, depressive, bipolar and related disorders, attention-deficit hyperactivity disorder, and impulse control disorders to a CDR every two years.

But Social Security has not provided estimates of how many disabled people from each of those groups will be impacted. In fact, Social Security hasn’t released any estimates of how many people will be impacted, period, only the number of CDRs it expects to undertake. (A single person could face multiple CDRs in that time period.)

Kathleen Romig, a senior policy analyst at the Center on Budget and Policy Priorities, explained by email that “SSA provides no estimates of the number of people who would be affected. No number of people who will be subject to additional reviews. No number of people who will be terminated.”

Instead, Social Security just published the projected cuts of $2.6 billion. That leads Romig to believe the agency has data it isn’t releasing: “They DO have a number of program dollars saved — in fact, two numbers, one for SSDI and one for SSI. I think it stands to reason that SSA has estimated how many disability beneficiaries would be cut off and they are withholding it. I’ve never seen the estimated number of people left out of a proposed rule; it’s a vital piece of information.”

The rule is open for public comment on regulations.gov until January 31, 2020.

Historically, if two entities oversee aspects of someone’s work experience — such as wages, hours, and policies — either separately or together, they could be considered “joint employers,” which means they are both liable for labor violations. While this standard isn’t used very often, it can be a powerful tool for holding large corporations accountable.

Think contractors who work alongside direct employees, doing the same work at a site where the parent company controls hours and policies, the staffing company handles payroll and employee screening, and both have hiring and firing rights. If workers filed a complaint, a judge might determine that the worksite and staffing company are joint employers, depending on the specific facts of the case.

Now, after a failed attempt at narrowing the definition of a joint employer in Congress in 2017, the Trump administration is turning to the regulatory process to make it harder for workers to file claims that rely on this standard.

When Congress passed the Fair Labor Standards Act in 1937, it explicitly acknowledged that some workers, in disputes over wages, hours, and child labor practices, might be in a joint employer position. The question has been a subject of back and forth litigation and rulemaking because of the high stakes. The landmark Browning-Ferris case in 2015, which briefly established more protections for people making joint employer claims, allowed workers to leverage bigger wins and push for a larger culture of change. (Currently, a combination of litigation and rulemaking have the ruling’s status in flux.)

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The Department of Labor recently announced a proposed rule to narrow the standards of who counts as a “joint employer” under the FLSA. It is extremely restrictive, requiring companies to meet a highly specific four-point test and disallowing consideration of other factors. For example, if a contract includes hiring and firing rights for the parent company but they aren’t exercised, the court couldn’t consider that, and the parties would fail the joint employer test; the parent company would not be liable for damages.

Much news coverage on the administration’s attempt has focused on what it means for fast food workers, who often work in franchises with a parent company and local owner. But the implications are even bigger, affecting millions of workers across the economy in the garment, agricultural, construction, hospitality, and building services industries, among others. It’s an especially important distinction for people caught in the dramatic increase in “contingent labor” in recent years.

It also affects third-party logistics (3PL) employees who handle outsourced elements of the supply chain such as packaging, delivery, warehouse maintenance, and more. Think forklift operators at factory warehouses and delivery drivers. 3PL is one of the biggest areas of growth, according to Tia Koonse, Legal and Policy Research Manager at the UCLA Labor Center. 86 percent of Fortune 500 companies are using third-party logistics agencies, outsourcing labor along with liabilities to increase profits. Nearly half of Google’s workforce, for example, is not directly employed by Google.

“I think that this [proposed rule] is aimed at workers who have spoken up, and the workers are not going to back down,” commented Jonnee Bentley, associate general counsel at SEIU. Fight for $15 worker-organizers have achieved significant victories across the U.S. in recent years; for example, there was a 2014 NLRB ruling in favor of McDonald’s workers who complained about retaliation for labor organizing.

As part of its proposed rule, the Department of Labor provided a handy breakdown of hypothetical examples for people wondering how different scenarios might be interpreted under the new rule, which reads more like a how-to on avoiding a joint employer determination. It’s also heavily stacked with examples from fast food franchises, although according to Catherine K. Ruckelshaus, general counsel at the National Employment Law Project, franchises haven’t been involved in joint employer disputes under the FLSA.

Curiously, though the rule touts cost savings for business, the only costs calculated in the current draft available for comment are $420 million in expenses associated with implementation. Under the Obama administration, franchise growth consistently outperformed the private sector, suggesting that increasing joint employer protections did not harm business growth.

Undermining the way employers and courts interpret the FLSA isn’t the only way the Trump administration is using the rulemaking process to make it harder to bring joint employer claims. Last year, the NLRB announced a proposed rule, not yet finalized, to redefine the interpretation of the joint employer standard in the National Labor Relations Act, the legislation that surrounds worker organizing and labor disputes: If workers want to start a union, complain about unionbusting activity, or get support with the fight for a fair contract, they need the NLRB.

The NLRB wants to shift the joint employer definition to one that requires direct and immediate control of working conditions, moving away from broader Obama-era guidance that also accounted for “indirect control,” such as exerting guidance over business practices or providing software used to run a business.

The change would be good news for companies such as McDonald’s, as it would make it more likely that the corporation would not be considered a joint employer of franchise employees for the purpose of trying to unionize, and would have no obligation to come to the table to bargain. The franchise operator, meanwhile, would have limited options for meeting worker demands, because of price setting and other dictates set by the corporation. It should be noted that even in a case where franchise employees did manage to prove joint employer status and win a union contract, it wouldn’t automatically apply to other franchises — but the win could help workers organizing at other locations.

That these two proposals are similar is not a coincidence, Bentley said. “They’re trying to make it easier for big corporations to avoid liability by using contractors or franchisers.” The Obama-era guidance has enabled workers to hold franchises accountable for violations in the past.

“It’s part of the systematic dismantling of gains made in the previous administration,” said Koonse. “I feel the [Department of Labor] rule does not hold joint employers accountable in the way Congress intended,” she added, noting that the definition as proposed is so narrow that it may not withstand legal scrutiny.

The push through multiple venues to make it harder for workers to hold joint employers accountable is part of a larger pattern of attacks on labor rights, such as undermining overtime rules, cutting numbers of OSHA inspectors, and cutting billions of dollars in funding from the Black Lung Disability Trust, which supports coal miners living with black lung disease. One of Trump’s earliest cabinet appointments was to name fast-food giant Andrew Puzder secretary of labor — Puzder ended up withdrawing after outcry, but the initial nomination signaled a much more business-friendly approach to worker rights and protections. Working to unwind rulemaking from prior administrations and develop more restrictive interpretations of the law fulfills the president’s deregulation mandate, at a high cost to workers.

My fibromyalgia doesn’t care about my work schedule. It doesn’t time its flare-ups according to my current proximity to heating pads. Even more than Beamer, my service dog, fibromyalgia is the most constant presence in my life, on my mind at all hours of the day. In the morning, my joints could be so sore that I forgo my cup of coffee, because I can’t trust my grip and I don’t want to clean up another shattered mug. By the afternoon, those aches may give way to a fog that clouds my mind until any attempt at sustained concentration feels like running up a downward escalator — a lot of effort, but little payoff.

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People with disabilities are supposed to be spared from the cuts. But in practice, many people with serious health conditions will be at risk of losing food assistance, because SNAP uses other government programs with an extremely limited definition of disability as proxies for disability status. So, I’m on the chopping block.

If I need to miss a shift because I woke up feeling particularly sore or because the afternoon fog rolled in early, the benefits I rely on to eat are threatened. Good day or bad, doctor’s appointment or not, I have to make sure I’m on time and ready, smiling at the customer service desk of the museum that is my work place.

Managing my condition is a full-time job, in addition to the job that actually pays me. To be able to show up for work, I have to go to three doctors’ appointments per week: two sessions of mental therapy and one session of occupational physical therapy. That doesn’t include the constant stream of other specialists who might have some new insight into my pain management: psychiatrists, rheumatologists, and pulmonologists.

All told, the copays add up to about $240 a month, just for the therapy sessions. That’s 12 times what I get from the Supplemental Nutrition Assistance Program. 20 bucks a month for food sounds trivial, but anyone who has ever really struggled knows that $20 can make or break you.  For me, it’s the difference between an extra visit with a specialist or suffering until the next paycheck hits.

That doesn’t mean $20 is enough — like most of the strategies I use to treat my disease, SNAP is inadequate but essential. But the administration is putting it at risk with this new rule.

All of us have limited time and energy to spend in our 24 hours. But for some of us, to make it through requires more effort than others. In the three years since my diagnosis, I’ve come to terms with the fact that fibromyalgia isn’t going away. The appointments and the meds and Beamer don’t care about my work schedule because they make my schedule possible in the first place. With this latest rule, the Trump Administration is doing the opposite — they insist that I continuously prove that I’m building a life for myself. Why can’t I just build it?

Editor’s note: To leave a comment on the proposed regulation to limit states’ ability to waive work requirements, visit handsoffSNAP.org.

On the sidewalk where I stood in Nogales, Arizona, a storefront window displayed mannequin brides, dressed in white wedding dresses. Not 50 feet away, the coils of glinting wire expand like a lethal slinky.

It was morning, and the town of 20,000 was just beginning to wake up. Downtown in the shopping district, a garbage truck rumbled past, and Norteño music played from stereos outside of just-opening shops. Shuttle drivers congregated along the sidewalk, waiting for Tucson or Phoenix-bound passengers to fill their vans.

In November 2018, the Trump administration ordered that the wall at the Nogales port of entry be topped with concertina razor wire. Last week, more rows of wire were suddenly added to the Arizona side of the wall, and stretched much further than the immediate port of entry. And this time, the wire was placed all the way to ground level.

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Concertina razor wire is a form of coiled barbed wire, first used in World War I. It gets its name from a musical instrument which much like an accordion has bellows that expand to produce its sound. It would be a pretty name, if it were not so dehumanizing and brutal an object.

Nogales residents alerted Mayor Arturo Garino, who said he was not told that more wire would be added. “Let me tell you,” he told Arizona Public Media, “They didn’t even have the courtesy to tell us they were doing this in the first place.” He requested to meet with federal officials to discuss the issue but was refused.

A unanimous vote by the Nogales City Council on Feb. 6 resulted in an official resolution demanding that the wire be removed from city limits.

“Concertina wire has sharp razor-like blades that are coiled [and] is designed to entangle its victim as the razors slice/cut deeply into the flesh and causes indiscriminate injury which can be fatal,” reads the resolution. “Placing coiled concertina wire that is designed to inflict serious bodily injury or death in the immediate proximity of our residents, children, pets, law enforcement and first responders is not only irresponsible but inhuman.”

Indeed, we could follow barbed wire backward in time and find it present during our worst moments as a nation. First patented in 1874 by Joseph Glidden, it was used by land grabbing homesteaders to corral their animals and section off land parcels across the indigenous-occupied West. Thus, Native Americans referred to barbed wire as “devil’s rope.”

Barbed and concertina razor wire have been used to ensnare unsuspecting men on battlefields in faraway places, to imprison Japanese-American families in World War II-era internment camps, to secure modern-day prisons which disproportionately incarcerate people of color. And surely, we have all seen photographs of emaciated children penned into Nazi concentration camps by such wire?

Now, it’s being used to further cut a city in two. For many residents, who have long called their city Ambos (“Both”) Nogales, the border between the U.S. and Mexico is a forced line separating what has historically been a single bi-national community. While in 1918 — after a misunderstanding resulted in a fatal cross-border gunfight — the two countries constructed a mutually agreed-upon fence, the barrier was porous and meant as a friendly method of keeping order. Residents were easily able to cross the border to visit family members or to shop, supporting the economy of both cities.

Fast-forward to the 1990s, when the Clinton administration adopted a border security policy called Operation Gatekeeper, which severely increased Border Patrol presence and turned the friendly line into a fortified wall, made from steel landing strips left over from the Vietnam War. Crossing the border became complicated, and in some cases, impossible. Some families were split up, no longer able to visit with one another.

So began the ritual of visits to the wall, to hold hands and talk between the slats. “Especially on weekends, it’s not uncommon to see people camped out in plastic chairs on the U.S. side, while loved ones in Mexico set up tables and lay out a family meal on the other,” wrote Arielle Ziontes in a 2017 article for the Nogales International.

But Ziontes described the installation of metal sheets of mesh along International Street at a popular meeting place, which reduced visibility and prevented families from being able to touch or hold hands.

Now with the addition of the concertina wire along the Nogales wall, any other meeting places have effectively been sabotaged.

As I stood on International Street, staring through the mesh where family members used to hold hands, I noticed a Border Patrol agent parked in the shade of the wall. He rolled down his window as I approached. I asked him about the wire — when it went up, who installed it, if it will be placed at ground level for the entirety of the wall. He shrugged. He didn’t know anything about infrastructure, he said; that’s not part of his job.

“Is it the National Guard’s?” I asked.

“I don’t know,” he said, and he rolled up the window.

If the Trump administration refuses to tear down the wire, Mayor Garino said he’s prepared to go to court. And it’s not just here in Nogales that officials are pushing back against federal directives to militarize the border. Just before President Donald Trump’s State of the Union speech, New Mexico’s Democratic Gov. Michelle Lujan Grisham ordered most of the National Guard troops stationed along the New Mexico border to withdraw from their posts, citing a “charade of border fear-mongering.”

In a speech on Feb. 12, California Democratic Gov. Gavin Newsom announced that he was withdrawing the 360 National Guard troops stationed at the Mexico-California border. “This border emergency is a manufactured crisis,” he said. “California will not be part of this political theater.”

After deploying additional troops to the southern border in November 2018, Trump spoke at a rally in Bozeman, Montana. “The Democrats want to invite caravan after caravan of illegal aliens to flood into your communities,” he told the crowd. And then he seemed to reassure them, saying, “We have our military on the border. And I noticed all that beautiful barbed wire going up today. Barbed wire used properly can be a beautiful sight.”

But from where I stood in Nogales, the wire was anything but beautiful. The metal coils caught the blinding glare of the sun, and the mid-morning light through the wall made shadows on the ground that looked like jail bars. Just yards away in Mexico, on the other side of the wire, children filed out into a schoolyard. I could see them dribbling a basketball, jumping rope. Their sing-song voices traveled over and through the wall.

This year, the renewal process has been made even harder by the partial government shutdown, which accelerated deadlines with no notice for the more than 40 million people who receive benefits. And that’s just one of the effects the shutdown has had on SNAP and other nutrition assistance programs.

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On Jan. 8, the U.S. Department of Agriculture announced that February SNAP benefits would be distributed by Jan. 20, in order to get around shutdown-related restrictions. That called for a herculean effort: Millions of new applications and recertifications that would normally be due in February now need to be submitted by mid-January. Normally, new applications and annual recertifications take place on a rolling basis. For recipients who couldn’t gather supporting material in time or didn’t know about the deadline, such as furloughed federal workers hoping for nutrition assistance while they remain without pay, the time to file for benefits has already come and gone.

At the same time, some grocers have stopped accepting SNAP because the government shutdown means they cannot renew their licenses. As the shutdown continues, the number of vendors will dwindle, a particular issue for people in areas with limited options.

The effects of these problems are wide-reaching. Nearly half of SNAP recipients are children, and LGBTQ people, along with disabled people, are much more likely to need nutrition assistance.

States administer the SNAP program, and the state-by-state chaos has been frustrating. “I have not received any update from the state’s human resource department about how this would affect us. In every other instance of benefit changes, we are sent copious written notification(s),” another recipient told TalkPoverty via email. Documentation also sometimes contradicted itself, adding even more uncertainty to the process.

Others reported that they heard about the deadline from news stories or Facebook, and struggled to get answers from officials in local offices — many of which set different deadlines, making it difficult to determine when applications and renewals needed to be submitted. At least one recipient read on social media that SNAP benefits distribution would be reversed if agencies ran out of money, something that shouldn’t be possible with EBT cards. Confusion and fear like this are familiar for many low-income people, who sometimes feel at the whims of capricious government policies and procedures.

“I’ll push myself not to use [benefits distributed early] until February but there’s a fear they could be taken away. Everything just seems so uncertain. Poor people know to use what we have when we have it because we can’t depend on what will be there in the future,” said one SNAP recipient.

SNAP is not the only nutrition assistance program with funding thrown into uncertainty by the shutdown. Also threatened are the Special Supplemental Nutrition Program for Women, Infants, and Children, known as WIC, which supplies benefits to 7 million pregnant people, new parents, infants, and children, and the Food Distribution Program in Native American communities, which fed over 90,000 people a month in 2017. The latter adds to the shutdown-induced woes — which include limitations on access to health care — in Native communities. The national free and reduced-price lunch program, which feeds more than 30 million kids annually, could also be in danger if the shutdown persists into March.

Even after the government reopens, the danger isn’t over, thanks to a dangerous Trump administration proposal to make work requirements even harsher in SNAP, which Congress explicitly refused to do in the latest Farm Bill. Currently, 33 states and Washington, D.C. have waivers in place for high unemployment areas to relieve the strict time limits for so-called “able-bodied adults without dependents” written into SNAP in 1996, which restrict benefits eligibility to three months out of every three years for those considered “able-bodied” with no legal dependents. The Trump administration wants to sharply curtail states’ flexibility to use these waivers, throwing 755,000 under- and unemployed people off SNAP.

“I don’t have contingency plans because I can’t have any,” says a disabled SNAP recipient in Colorado who struggled to get an answer about her recertification documents, normally due in February. Members of low-income communities have extensive experience creating their own safety nets to support each other through hard times, but “I think that people are going to get burnt out and stretched too thin by all the need that surrounds them.”

Editor’s note: This post has been updated to clarify the Trump administration proposal on SNAP work requirements and the current status of work requirement waivers.