“I was given a stack of papers, and I remember on a couple pieces of paper the words were blurry, this is how much copying was going on. They just said, ‘it’s a normal consent form; if something happens to you and the baby, if the baby’s heart stops beating or yours, do you want us to save you?’ Of course I do, so I signed the form, a bunch of forms.”

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Brewington said she was later told those papers included the consent forms that gave her providers permission to drug test her and her child. She said she never saw such consent plainly stated, even when she checked for it after the fact.

Drug testing pregnant and postnatal people and their infants without the patient’s informed consent is a common practice in the United States — but only among certain demographics. Several studies have found that Black women in particular are subjected to prenatal drug testing at higher rates than women in other racial and ethnic demographics, but do not have higher rates of positives. A study published in the February 2004 issue of Child Abuse & Neglect also found several other factors unrelated to drug use that led to higher testing rates, including single motherhood, tobacco use, a history of preterm labor, and a history of child services involvement, among others.

“I provided care in Black and brown communities, so [drug testing pregnant and postnatal patients] was routine, and it wasn’t until I got out and saw the difference in the way care was provided in communities that…were wealthier that it became clear that this is not routine, this is not what everybody does,” said Jamila Perritt, an OB-GYN in Washington, D.C., and the president and CEO of Physicians for Reproductive Health. Perritt also recounted that when she was pregnant, she was not drug tested despite being one of the more commonly-tested demographics (Perritt is a Black woman), which she attributed to her status as a physician.

Now activists are fighting back, saying the practice is rooted in racism and classism, and that it denies patients crucial agency over their care.

“Is our consent truly informed? It can’t be in those reams of paper that people are signing,” said Perritt. “What does it mean if we as physicians say informed consent is one of our core values? …Who would think you’re signing a form that could result in such severe consequences? The truth is that it is a violation of trust to not take the time to name that [drug testing consent is included] and its consequences.”

As Brewington’s case demonstrates, those consequences can be devastating. After her newborn son tested positive for opiates and cocaine, which Brewington admits to using once during the last term of her pregnancy, New York child services placed him into foster care. Although her two older children were out of the state at the time on a vacation with their father, child services ordered her to bring them back and placed them into foster care as well. They are home with their mother now, but Brewington is still fighting to regain custody of her son, who was awarded to his father.

“The medical profession, health profession, that is still one of the top three referrants [to child services],” said Jeyanthi Rajaraman, a parental defense attorney at Legal Services of New Jersey. Rajaraman added: “I’ve asked [at hospitals] when do you drug test and when do you not, and the information that comes out is that ‘if mom shows up and we’ve never seen her and she didn’t do a hospital tour and says she’s had no prenatal care and she’s by herself.’ What I really think they are also saying is Black and poor or no medical insurance because that is the majority of our clients who face and experience drug testing.”

Because child removal data is self-reported by the agencies, which do not track how many removals occur due to hospital drug tests, it is difficult to gauge how often these tests lead to severe consequences on a national level. One report by Movement for Family Power estimates that in 2017, in the Bronx borough of New York City alone, 60 babies under one month of age were removed because of maternal substance use. The United States child services system acknowledges that Black and Indigenous children are markedly overrepresented when it comes to system involvement; between 2000 and 2011, one in nine Black children and one in seven Native American children had been removed from their parents’ care, versus one in 17 white children.

Infants who do experience side effects due to in utero substance exposure, which can occur from both prescribed and non-prescribed substances, fare better when they are able to have close maternal contact. Removing newborns from parents like Brewington because of substance use — a common result of pre- and postnatal drug testing — can decrease feelings of bonding and the parenting sense of competence, and has been linked to some infant cognitive and memory impairment in animal studies. It also leads to decreased ability to breastfeed, which normally helps reduce symptoms of withdrawal in substance-exposed newborns and provides some protection against illnesses, including COVID-19.

Rajaraman noted that she often encounters medical professionals who recognize this reality but are shockingly unaware of how their call impacts the family. “I’ve had many doctors say to me that by calling [child services] they don’t know the baby would be taken, they say ‘I was calling because I thought it would help get mom into [a] program, I would never recommend separation.’”

In 2021, New York State attempted but failed to pass a law that would ban drug testing of pregnant and postnatal people and their newborns without informed consent or a legitimate medical necessity.  Activists are planning to push the bill again during the 2022 legislative session. Should it pass, it would require that written consent be obtained at the time of testing and delivered to the patient in a manner that is clear and understandable. It must also include a statement that the testing is voluntary. Activists in Washington State also considered pursuing similar legislation, but decided to table the movement for the time being. Should New York succeed in passing the informed consent bill in 2022, it could pave the way for other states to take necessary action to protect pregnant and parenting people and their infants from non-consensual drug testing.

My husband, on the other hand, was never referred to as an addict, even though he was actually being accused of using one more illicit substance than me — methamphetamine in addition to heroin. It may be hard to understand why something like this matters. After all, don’t people use the word “addict” all the time?

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There is an ongoing debate among the addiction treatment and harm reduction communities about which terms should be used when referring to drug use and addiction, and in what settings. In 2017, the Associated Press Stylebook updated their recommendations for reporting on addiction and drug use to exclude potentially stigmatizing terms such as “addict,” “alcoholic,” and “drug abuser,” except in the form of direct quotes. Instead, they recommend using person-first language, such as “person with a substance use disorder” or “people who are addicted to opioids.” These changes aligned with updates to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, as well as recommendations by the Office of National Drug Control Policy.

Others followed suit: a 2018 update to the National Institute on Drug Abuse’s blog specified that they no longer use terms such as “addict” or “substance abuser” (though the institute’s name remains unchanged), and in 2020 dictionary.com updated their website to replace all uses of the word “addict” as a noun with terminology such as “person with an addiction” or “habitual user.” They also updated their definition of the word “addict” to note that some might consider it offensive, and added a lengthy sensitivity note explaining: “addiction is the complicated result of genetic predisposition intersecting with dysfunctional behavior, neurochemical modification, environmental factors, and social influences,” and that many members of the treatment and recovery communities advocate against its use.

Controversy around terms such as “addict,” “alcoholic,” and “substance abuse” has been boiling for years. Many members of the medical, recovery, and harm reduction communities are happy to see changes like this implemented. For example, Olivia Pennelle, founder of Liv’s Recovery Kitchen and a journalist in long-term addiction recovery who covered the language debate for The Fix in 2018, said the dictionary.com changes are “important,” adding: “Only 10 percent of people [with a substance use disorder] get access to treatment…[and] a major factor is stigma. If we can do anything to change that, we should.”

On the other hand, Amy Dresner, also a journalist in long-term addiction recovery who authored an autobiography titled My Fair Junkie: A Memoir of Getting Dirty and Staying Clean, said she considers the use of language such as “junkie” and “addict” to be empowering when reclaimed as self-identifiers. And she says terms such as “person with a substance use disorder” fail to “convey the horror” of what she experienced during her active addiction.

“All that PC language feels like putting lipstick on a pig and hiding it more…[the changed terminology] sounds better, it sounds like you have empathy but does it really change somebody’s opinion?” she asked.

Recent research backs the moves by dictionary.com and the Associated Press. A series of studies published in the Journal of Drug and Alcohol Dependence in 2018 found that several terms, including the word “addict,” were associated with negative social perceptions. It also found that these terms produced negative biases significant enough to impact people’s access to healthcare; for example, both treatment professionals and members of the general public were more inclined to recommend incarceration or other punitive measures to those labeled an “addict” or “substance abuser” while a “person with a substance use disorder” was more likely to be deemed in need of medical care.

Robert Ashford, the lead researcher in the language studies, explained a potential cause in a story I wrote for Filter Mag. “[Language is] the primary way we communicate…The cliché ‘words have power’ is the truth.” Regarding language employed in court settings specifically, he added: “It’s not that those [terms such as ‘person with substance use disorder’] are inherently positive; it’s that they are less negative than the pejorative terms that have been created over time. These things have a really strong emotional reaction to most people. We don’t need to do [courtroom actors] any favors by…using language that has come to mean something biased.”

“How you speak about the person you’re representing is how other people will see them and so using the correct language is extremely important,” added Dinah Ortiz, a harm reduction-oriented parent advocate located in New York City. “Language is like a stepping stone, then comes the harder stuff, but it starts with language…if we don’t care about calling a person a ‘junkie,’ a ‘dope fiend,’ a ‘crackhead,’ then we don’t care about that person.”

In my Florida State child services case, my husband and I both received the same charges — neglect and imminent risk of harm — and we both had our parental rights terminated in early 2020. On paper, we shared the same nightmare outcome at the end of a case riddled with misrepresentations of fact, blatant bias, and government overreach at its darkest. But there was a palpable difference in the courtroom between his treatment and mine. While my every word was interrogated with suspicion — I was never even counted as having income despite clearly being able to pay my bills and child support — my husband was rarely questioned. I was criticized for circumstances he and I shared, such as not having a car and relying on his parents for rides to our supervised visits, while he usually escaped mention.

At the disposition for our initial trial, when the judge determined that our daughters were unsafe in our care and should remain with their paternal grandparents while we completed a slew of tasks to try to regain custody, the judge cited as her reasons for issuing these charges against me: “The mother is an extraordinarily educated and gifted individual. You have a gift for language, both oral and written. Unfortunately, the Court finds that you could probably sell ice to an Eskimo.”

Although she issued the same charges against my husband, the judge stated that she “found the father’s testimony essentially credible before this Court,” and mentioned that he acknowledged having a “substance abuse history,” something I likewise acknowledged about myself (though I clarified it as a substance use disorder, as per the DSM IV and V).

While it is impossible to pinpoint my classification as an “addict” versus my husband’s as a “person who uses heroin and meth” as the reason for our differences in courtroom treatment, it can’t be ignored that this experience aligns near perfectly with the outcomes of Ashford’s experiments.

And, as explained by Sheila Vakharia, a former social worker and the current deputy director of the Department of Research and Academic Engagement for the Drug Policy Alliance: “When you refer to someone as an ‘addict,’ and you make salient one person’s single relationship with a drug or several drugs, what happens is you then start to see that person through that lens of that one characteristic or trait, and it can make it hard to see the complexity of a person’s identity.”

Still, it’s hard to know how much, if at all, my case would have changed if I’d not been labeled an “addict” at the outset. Would my daughters be home today? Or would I merely have had a slightly more comfortable courtroom hanging?

This November, the Supreme Court will hear arguments on Fulton v. City of Philadelphia, which will decide whether foster and adoption placement agencies have the right to use their religious beliefs as an excuse not to comply with nondiscrimination protections.

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In 2018, the Philadelphia Department of Human Services (DHS), the city’s child services department, stopped referring prospective foster and adoptive parents to Catholic Social Services for certification and oversight after a story in the Philadelphia Inquirer revealed that the agency was actively discriminating against gay and lesbian couples for religious reasons. When Catholic Social Services refused to change their stance on licensing queer foster parents, the city allowed their foster certification contract to lapse; the subsequent lawsuit, which is now pending before the Supreme Court, claims that the city violated their religious freedoms by ending their contract for this reason.

Barrett has expressed a number of beliefs in her public life that suggest bias against the LGBTQ community. She was a signatory on a letter to the Catholic leadership expressing commitment toward “the significance of sexual difference and the complementarity of men and women…and on marriage and family founded on the indissoluble commitment of a man and a woman.” She described the application of Title IX protections to transgender people as a “strain,” and has openly opposed marriage equality. She was also faculty for the Blackstone Legal Fellowship, which is run by a law firm whose executive director recently argued for reestablishing criminal penalties for consensual queer sex.

Fulton is not the only way in which LGBTQ rights within the foster system have been questioned this year. An executive order issued by President Trump in late June, titled “Strengthening the Child Welfare System for America’s Children,” does not directly address the upcoming Supreme Court case, but it does seek to solidify the rights of faith-based organizations to work in the child services field, and to clearly solidify their First Amendment rights to engage in this work — the very argument up for debate with the Supreme Court.

The order states: “This guidance shall also make clear that faith-based organizations are eligible for partnerships under title IV–E of the Act (42 U.S.C. 670 et seq.), on an equal basis, consistent with the First Amendment to the Constitution.” It is this same brand of messaging that has surfaced repeatedly in Barrett’s opinions related to LGBTQ rights, and on the rights of the Catholic Church to exact its views on society at large.

“It’s really critical and important to note…the language used,” said Alexandra Citrin, senior associate at the Center for the Study of Social Policy. “The language in the Executive Order might appear harmless, but what we’ve seen from this Administration is consistent undermining of certain communities including those who are LGBTQ+, Black, immigrant, etc. and prioritizing who they believe should be foster and adoptive parents. We are likely going to see guidance that emphasizes partnerships for faith-based organizations — including those that use federal dollars to discriminate.”

That creates anxiety for LGBTQ families, who have only recently gained the right to foster and adopt. It was not until 1997 that the first state in the country, New Jersey, officially allowed same-sex couples to adopt statewide. Florida was the last state to overturn its anti-gay adoption policies in 2010.

“The concerns that LGBT adults have about whether or not they’re going to be discriminated against have not gone away,” said Stephanie Haynes, executive director of Philadelphia Family Pride, which is a co-appellee in the Catholic Social Services case. “You can imagine families in same-sex couples would decide not to become foster parents at all because of the risk of being turned away, not only because they do not want to subject themselves to that but also for families with kids already, they would involve their kids in discussions about the possibility of having foster kids in the home, and want to protect their kids from that possible discrimination from the foster care process.”

LGBTQ foster and adoptive parents are not the only queer group who face discrimination in the foster system, though they have received the most attention and study in the field. LGBTQ youth, for example, remain overrepresented in the child welfare system, and are at heightened risk for homelessness. And one study of low-income Black mothers found that those who identified as lesbian or bisexual were 4.19 times more likely to lose custody of their children than heterosexual Black women, a population already subject to racial disproportionality within the system.

Nancy Polikoff, a professor of Law Emerita at American University Washington College of Law, said that discrimination “can be obvious, as in not recognizing who the child’s family members are, but it can also be more subtle.” She cited a case in Kansas in which a lesbian mother was told by her case worker, who was employed by the faith-based agency St. Francis Community Services, that she needed to be “fixed” so that she would not spread her queerness to her child. Ultimately, her parental rights were terminated. While her orientation was not cited as the reason that her children were removed from her home, interactions between her and the case worker indicate that it likely played a role.

Similar concerns exist for transgender children. “We have had a number of cases where parents who have, in particular, trans children end up having their child removed because they are supporting their children’s gender identity,” said Cathy Sakimura, family law director at the National Center for Lesbian Rights, which filed an amicus brief in the Supreme Court case. “We recently had a case where a very low income mother lost all of her children; they were all removed because one of her children was gender non-conforming…There really wasn’t anything else other than some vague allegation about the home being dirty, and all of the testimony — everything that was presented — was all about the child and whether the child was given feminine clothing.”

“There are great faith-based organizations that partner with child welfare agencies and do it well; the problem is there are some faith-based organizations that discriminate…against what foster parents they will license, which can limit who can be licensed – for example, if there is only one licensing agency in the community, an aunt might not be able to be licensed to care for their niece if the agency doesn’t agree with her identity. And, it also raises into question how these are supporting the diverse identities of youth in foster care,” said Citrin.

If Barrett’s confirmation is successful, her placement could tip the Supreme Court in the direction of anti-LGBTQ policymaking. The ruling on Fulton v. City of Philadelphia will undoubtedly have dire impacts on children caught up in the foster system, but a broad enough decision could also open the doors for discrimination in any social service setting that contracts with agencies that cite their religion as an excuse to discriminate, including homeless shelters and food banks. It is impossible to predict how Barrett will vote on the case; however, several of her past actions showcase clear bias.

The case is currently pending before the Supreme Court, and arguments are set to begin just after Election Day. In the meantime, Catholic Social Services is still contracted with Philadelphia DHS to conduct case management for system-involved families of origin.

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The rider is named after Jessica Grubb, a Michigan woman who died at age 30 after being prescribed oxycodone for postoperative pain while only a few months into recovery from a seven-year heroin addiction. The Protecting Jessica Grubb’s Legacy Act was sponsored by Democratic Senator Joe Manchin III and Republican Senator Shelley Moore Capito, both from West Virginia, one of the states hit hardest in recent years by an influx of illicitly manufactured fentanyl. Currently, under 42 CFR Part 2, patients engaged in substance use disorder treatment programs that fall under federal purview — which essentially includes any program that utilizes opioid agonist pharmacotherapy like methadone and buprenorphine — must provide informed consent each and every time their records are shared. So when a patient authorizes a methadone program to share medication information with their primary care doctor, that provider can’t disclose the information to a specialist unless the patient signs a new, specific consent. When the act goes into effect in 2021, patients will only have to provide consent once. After that, their records can be re-shared in perpetuity by any health care entity who receives them.

The changes reflect the way privacy and consent are handled for most of health care. The act is effectively changing records disclosure consent rules to match those of the Health Insurance Portability and Accountability Act (HIPAA), except that it still preserves the initial consent required by 42 CFR Part 2.

Despite popular belief, HIPAA allows health care workers to share patient records without their consent for a number of reasons related to health care operations. “HIPAA is not a [patient] privacy protection. It’s actually an authorization to share your info as broadly as a health care payor believes they need to share it, which I will tell you is very broad,” explained Danielle Tarino, president and CEO of Young People In Recovery, who previously worked at the Department of Health and Human Services and, while there, drafted the 2017 revisions to 42 CFR Part 2.

Now, instead of special protections for patients undergoing addiction treatment, these programs will have the same privacy standards as all of health care.

The fight for privacy rights has divided key players in the addiction treatment community, many of whom are otherwise aligned. Proponents of the changes include the National Council of Behavioral Health, the American Society of Addiction Medicine (ASAM), the Substance Abuse and Mental Health Services Administration (SAMHSA), Shatterproof, and several other prominent treatment and health care voices. Those who oppose it, a group that includes the National Alliance for Medication Assisted Recovery, Legal Action Center, Young People In Recovery, and Faces and Voices In Recovery, have successfully thwarted similar proposals in the past.

“It’s just really disappointing to see that bill go through when the political will was, year after year after year, it’s not going to pass because people don’t want it to pass,” said Tarino.

Those who favor the changes say that not only will this make it easier for health care providers to share patient records, it will also allow these programs to be used in the electronic health records programs that are currently designed to meet HIPAA standards. Senators Manchin and Caputo argued that this kind of care coordination would prevent patients like Jessica Grubb from being “thrown back into the nightmare of addiction,” and insinuated that these privacy changes could have prevented Grubb’s death by ensuring all of her caregivers were informed about her addiction history. “There’s emergency glass that could be broken if someone was not able to disclose,” countered Talbott. “The notion Part 2 could cause what happened to Jessica Grubb to happen is outrageous…She disclosed [her addiction status], as most people do with their treatment providers.”

“42 CFR Part 2 said ‘if you go to treatment, we will give you the security and confidence to work on your issues,’” said Westley Clark, Dean’s Executive Professor in the Department of Psychology at Santa Clara University and the former director of the Center for Substance Abuse Treatment (CSAT) within SAMHSA. “Why would I go to treatment if they are going to blab my business all over town? We have a conundrum: We want people to go to treatment, but we are going to discourage people from seeking treatment by telling them ‘your privacy is irrelevant.’”

Part of what made these protections so strong was the re-disclosure rule eliminated by the Jessica Grubb’s Legacy Act. If a patient signed a consent so that their treatment provider could share pertinent care records with their insurance — a requirement in order to have insurance pay for treatment — then those records could only be shared with the insurance provider. Now, a patient’s insurance can re-disclose those records in perpetuity for a number of reasons, including for the vague and effectively ubiquitous use of “health care operations.” This likewise applies to anyone to whom a patient has granted consent.

The language of the new law explicitly states that patients have the right to revoke consent at any time. The problem is that patients must know they need to do this, and also, once records have been shared widely enough, it becomes virtually impossible to communicate and enforce that revocation. Privacy proponents worry that this re-disclosure license will deter patients from seeking treatment, and could lead to harm for those who decide to engage anyway.

“Some insurers have discriminated against substance use disorder patients, and substance use disorder patients have not gotten life insurance or other key insurance like that because they found out,” said Deborah Reid, senior health policy attorney with Legal Action Center, emphasizing the fact that discrimination against substance use disorder patients is not a thing of the past, but a very real problem her office deals with regularly. She argued that lessening privacy regulations for these patients is likely to increase the problem. Other examples of potential bad case scenarios resulting from the relaxed consent rules that she and her co-worker Jacqueline Setz provided were child custody cases, information spread through small town communities, and law enforcement gaining access to the records.

The new law includes anti-discrimination language, which proponents like Shatterproof say is a big win. “Certainly the illegal nature of using drugs should never be a barrier to someone accessing emergency help or medical care when they need it. That’s something we should hopefully all be working toward. This legislation is consistent with existing federal protections around the treatment of addiction,” said Kevin Roy, chief public policy officer at Shatterproof. Currently, the Americans with Disabilities Act (ADA) covers discrimination against substances use disorder patients — but only if they are not currently using illegal substances. If a patient is engaged with treatment but struggling to maintain total abstinence or does not seek total abstinence as a goal, they are not protected against discrimination by the ADA. But opponents say that the new anti-discrimination language won’t be enough to offset the dangers caused by allowing this sensitive information to move more freely. “It’s in there, you can’t discriminate, but if you do — who’s gonna be able to enforce that? With no patient first right of action, patients can’t stand up for themselves unless they have resources to retain counsel and sue in civil court,” said Talbott, adding, “even the parts that sound good, upon further reflection and digging, seem to be paper tigers.”

Although those who have been involved in the fight for years were disappointed that these changes were slipped through alongside the unrelated coronavirus stimulus bill, they say the fight isn’t totally over yet.

“We still have initial consent…it didn’t remove the complete foundation of Part 2, but it will be a different struggle now,” said Talbott, explaining some early-stage strategies NAMA-R and other groups are discussing in order to ensure addiction patients can still have robust privacy protections in the future.

Then, with a note of sadness, he added: “The 10 year battle to preserve privacy protections in Part 2 is over.”

“These are people’s lives we are talking about,” summarized Tarino. “There are very deep implications to people losing rights and privileges because of their participation in something that was supposed to help them.”

San Francisco enacted a citywide shelter-in-place order on March 17. Prior to the lockdown, Moss was seeing her three children twice a week in supervised settings like the public library or a designated visitation center. Now, she can only see her children through a screen.

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In response to the pandemic, child welfare agencies around the nation have been limiting or completely cutting off in-person visitation between children and their parents, leaving many families wondering when they will be in the same room again. It’s not just the immediate emotional consequences at stake: the extended time apart is bound to weaken some parents’ reunification cases. Experts are concerned it will lead to permanent dissolution of families unlucky enough to have open cases during the pandemic.

Although people unfamiliar with child protective services might believe the term refers to a unified national agency, “CPS” is actually an informal moniker that references a network of individual agencies run at state and jurisdictional levels under a variety of names, which are held together by a loose set of federal guidelines and a complex web of federal and state funding sources.

In some states, like New York and California, there have been no official statewide orders cutting off all in-person visitation; instead agencies have been directed to make decisions on a case-by-case basis. But those on the ground say this is still leaving many parents without a voice in the decision-making process.

Despite state-level guidance that visits take place whenever possible in New York, for example, “in individual cases we are seeing visits being curtailed…you might have a foster mother who has a vulnerability to COVID so she doesn’t want the children in her care going home for the weekends with their parents and coming back,” said Emma Ketteringham, managing attorney for the family defense practice with the Bronx Defenders.

In other states, like Idaho and Illinois, all in-person supervised visitations have been suspended. A few states, like Louisiana, continue to legally allow in-person supervised visitations, but are closing their buildings to the public and directing employees to work from home, which means supervised visitations, which often take place in these buildings and require staff to be physically present, cannot practically take place. While agencies appear to be allowing remote visitation when possible, for some — like parents with newborns and toddlers or children with developmental delays — remote visits just don’t work. In other cases, the parents, foster families, or agencies themselves might not be equipped with the technology necessary to facilitate remote visits.

Even in cases where these factors don’t apply, video communication is a meager replacement for face-to-face contact between a parent and a child, interrupting crucial bonding and raising the possibility of increased anxiety and depression in both parties, according to Richard Pittman, deputy public defender at the Louisiana Public Defender Board. Pittman expressed particular concern that parents might become so dejected by the loss of substantive contact with their children, as well as the loss of therapeutic services and mandatory classes that has gone hand-in-hand with the curtailed visits in many locations, that they might disengage altogether from the case. “Any progress they’ve made healing from the trauma of the initial removal is going to be reversed through all of this,” said Pittman.

Moss’ youngest child turned one shortly before the lockdown but had been in Texas with his foster mom on his birthday. Moss has still not been able to celebrate with him in person, and she’s terrified that she is now also going to miss his first steps.

“[He] had a long hard time learning to sit up and crawl. Luckily before this [lockdown] happened I got to see him to crawl and sit up. Now he’s on the verge of standing up on his own and I should be there for that. [His foster mom] is experiencing all this stuff that I should experience…I think it’s just going to break me if I don’t see my son walking,” she said. Moss also noted that her son has struggled with a recurring bronchial cough, which is particularly stressful during the pandemic, but she is barred from even texting his caregivers to inquire about his health without the social worker’s permission.

In child welfare cases, the consequences go further than feelings. Under the Adoption and Safe Families Act (ASFA), agencies are required to file for termination of parental rights when a child has been living in a non-relative out-of-home placement for 15 of the past 22 months. Some states have shortened that timeline to be as few as 12 months. Although parent attorneys should have a good case for requesting an extension — ASFA allows for consideration of mitigating circumstances and it’s hard to think of a better one than a pandemic — those extensions are neither guaranteed nor infinite. And once a termination petition is filed, bonding between parent and child is a crucial determining factor.

The factors that are used to determine whether or not it is in a child’s best interest to keep them permanently separated from their parent vary somewhat by state, but typically revolve around the ASFA timeline, the parent’s completion of court-ordered services like drug treatment and parenting classes, and the bond between parent and child, which is often measured by the frequency and quality of their visits.

“An agency can say ‘we understand the reason there weren’t visits is because of the coronavirus, but at this point it’s been x many months in foster care and they haven’t made progress and it would hurt the kids to go home now,’” said Amy Mulzer, a family defense appellate attorney in New York and an Elie Hirschfeld Family Defense Fellow at the NYU School of Law Family Defense Clinic.

Shayna, a Native American mother who lives in Wisconsin and asked that her real name not be printed in this story, has two children out-of-home in two different counties. Her youngest child has been on an adoption track, which means Shayna is fighting an uphill battle to have him returned home rather than having her parental rights terminated and her child forcibly adopted to his current caregivers. For her, the issue of bonding is not an abstract future hypothetical; it’s a very real factor she must now find a way to prove without being able to interact with her three-year-old in person.

“It seems like they are using the coronavirus as a reason to keep my son from me because they know the court date is coming up, which is not good because they don’t have observations on me from now to then,” she said. Her son’s foster placement had been in pre-adoptive status, but she was recently able to get her case placed back on a dual track, which means adoption and reunification are both on the table for the next six months. For her, visits could literally make or break her reunification case — but she says the social worker is refusing to use an approved family member as a supervisor in order to continue visits, even though that is technically allowed. “They are not utilizing any other options, just using this coronavirus to stop and hold the visits. I think they should look at the bigger picture: this little boy needs to be back with his mom.”

Less restrictive alternatives exist. For example, Richard Wexler, executive director of the National Coalition for Child Welfare reform, suggested moving visits to open spaces like parks when possible, and expediting the return of children who can safely be returned home. San Francisco recently issued an order requiring agencies to make efforts to supply families in need with the appropriate technology to engage in remote video visitation. It also directed agencies to analyze and identify cases in which children were nearing reunification, and to fast-track their return home when possible. Advocates in New York City say similar efforts are being made, though it is unclear (in both locations) exactly how many families are on track to actually receive these benefits. These directives also leave a host of other details unanswered, such as the minutiae of moving a child from one location to the next — suddenly far more complicated when having to also consider infection control.

The Children’s Bureau within the federal Department of Health and Human Services issued a letter in response to the pandemic that included suggestions to state agencies about how to handle a variety of topics, including parent-child visitation. The guidelines discourage courts from “issuing blanket court orders reducing or suspending family time,” and asks agencies and courts to “be mindful of the need for continued family time, especially in times of crisis and heightened anxiety.”

While these suggestions come from a credible source and can bolster arguments in favor of continued family visitations, without Congressional action or agency rulemaking, they are not actual orders. This leaves states and agencies the license to develop their own pandemic protocols.

“If a child can’t see their parents for months at a time, they start to believe maybe their parents don’t love them,” said Michelle Chan, a mother with prior child services involvement, and founder of California Rise, a Bay area child welfare activist group. “I really am worried about the deterioration of the parent-child bond. I feel it should be the most important thing.”

He would eventually learn that he had overdosed while using heroin, possibly laced with fentanyl, with a couple of guys who he met during his recent stint in jail. A few days later, Derbyshire woke up withdrawing and confused again. This time, he was in the bathroom of a Wal-Mart, and he had been revived by paramedics — which meant he had to run, because if the police took down his information, he would probably go right back to jail for violating the terms of his release.

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The two overdoses took place within days of each other in early April 2018, both less than two weeks after his release from Atlantic County Jail in New Jersey. Derbyshire, a 40-year-old tile setter with a history of opioid addiction, had been picked up for a bench warrant and a probation violation related to drug use.

He spent two months inside, during which he was involuntarily detoxed from opioids. He described the jail’s withdrawal protocol as two daily cups of a sports drink while being held on 23-hour lock down in a cell with two other men. Every other day or so, someone would check his vitals, and that was it. No methadone, no follow-up care after his release. And Derbyshire isn’t unique. In his case, he was not able to get methadone because he had not been incarcerated enough — one of many requirements at his facility’s program.

David Kelsey, the Atlantic County Jail warden, commented that “since its inception [the methadone treatment program] has provided services and referred to treatment eight hundred individuals.” In most other facilities, evidence-based treatment is not offered to anyone. But unlike Derbyshire, many of those who overdose after release don’t get up again.

As the nation struggles to slow the spread of the novel coronavirus, jails and prisons are beginning to release groups of people who are deemed safe for community return. Detention facilities in the United States are notoriously overcrowded, making them transmission hotbeds should the virus find a way in. Already, staff and inmates have tested positive in facilities in Florida, New York, and other places around the nation. California recently announced plans to release 3,500 people from state prisons, and New York City has already released 900. Montgomery County, Alabama, released over 300 people. The majority of people being identified for early release are those who have been accused or charged with non-violent offenses, many of which involve drugs.

A study out of Washington State found that in the first two weeks post-release, the relative risk of fatal overdose among former inmates was 129 times higher than the general population. A longitudinal study out of North Carolina found the risk of fatal overdose was 40 times higher than the general population in the first two weeks after release; for heroin users specifically, the risk was 74 times higher. And a 2019 article published in the journal of Addiction Science and Clinical Practice named post-release opioid-related overdose the “leading cause of death among people released from jails or prisons.”

The reasons behind this dramatic rise in risk are complex. The most obvious factor is that when people are forcibly detoxed from opioids but not provided adequate treatment for the underlying addiction, they return to their communities with significantly decreased tolerance but no more tools to help them deal with cravings than they had when they went in.

“They’re not cured, they’re not treated, they’re not in recovery, they just haven’t been able to use,” said Lipi Roy, a clinical assistant professor at NYU Grossman School of Medicine and an internal medicine physician who specializes in addiction. “Whether [the period of incarceration] be three months or three years, it doesn’t matter … The brain doesn’t forget.”

But new research suggests it’s not just a matter of simple tolerance. The unique social, environmental, and psychological factors faced by people who were recently released from incarceration also contribute to the enormous elevation in overdose risk. Now more than ever, as community supports shutter or limit their services in response to the pandemic and people are urged to stay home, those being released from incarceration are entering a new world filled with more stress and less stability and support than ever before.

“Decarceration without re-entry support systems is only going to be a halfway measure,” said Sheila Vakharia, the deputy director of research and academic engagement at the Drug Policy Alliance. “You can’t let people walk out the doors and assume they will be safer outside than inside.”

“If you think of a person in this situation, they may not have a place to live or the same social networks as when they went in. They might be more worried than usual of being arrested so they may be more likely to inject in hidden places and alone and to rush the shot,” said Megan Reed, a PhD candidate at Drexel University’s school of public health and the principal investigator in an NIH funded study on overdose risk after release. “Very few of the harms we associate with drug use have to do with the drug itself or the actual drug impact on the body; it’s the conditions in which somebody is using.”

Incarceration is a highly destabilizing experience that carries a host of other potential negative outcomes. While incarcerated, people are at risk of losing employment, housing, and even custody of their children, especially during long periods of detainment. Furthermore, the stigma associated with arrest and incarceration, or simply the difficulty and expense of communicating with the outside world while behind bars, can disrupt important familial and social relationships, leaving people with a smaller and weakened support system upon release.

Reed also pointed out that many people who have criminal justice involvement enter the system at heightened risk of fatal overdose. For example, people experiencing homelessness are at both heightened risk of overdose and incarceration. Rates of HIV and mental illness — both independent risk factors for fatal overdose — are also high in detention facilities. Many of these are also thought to be risk factors for severe cases of COVID-19, adding an extra source of anxiety for vulnerable people during the outbreak.

This pre-arrest susceptibility combined with decreased tolerance and the stress and uncertainty that people are facing after they have been released from jail or prison creates a perfect storm of dangerous vulnerabilities. “You have concentrations of other overdose risk factors already inside, and the communities that people are returning to are the same communities that are most impacted in the first place,” said Reed.

Exacerbating all of this is a lack of access to the most effective treatments for addiction to opioids, methadone and buprenorphine. Both are opioid-agonist medicines that reduce craving and withdrawal by filling the same receptors as short-acting opioids like heroin, but without delivering a euphoric high in patients who are properly maintained. They are both approved by a slew of licensing bodies, including the World Health Organization, which has included them on the list of essential medicines because of their proven efficacy in treating opioid use disorder and reducing harmful consequences of use, such as fatal overdose. Unfortunately, the majority of detention facilities in the United States do not offer these medications to inmates who are not pregnant.

“Because most correctional facilities still don’t offer standard of care treatment for opioid use disorder with methadone or buprenorphine, people are released not on treatment back to the community. Unsurprisingly, recurrence rates for opioid use are high and because people’s tolerance is reduced their risk of overdose increases dramatically,” said Sarah Wakeman, medical director of the Substance Use Disorders Initiative at Massachusetts General Hospital and an assistant professor of medicine at Harvard University.

The federal government recently loosened regulations around the prescribing of methadone and buprenorphine during the pandemic, but did not address access to people who are currently incarcerated.

Research has shown that maintaining people on medications for opioid use disorder while incarcerated and providing low-barrier referrals upon release will dramatically reduce the post-incarceration overdose rate. Wakeman and other experts also suggest dispensing naloxone, the drug that can reverse an opioid overdose, to people who are being released back into the community.

Spurred by lawsuits and activism, an increasing number of facilities are beginning to offer access to these medicines, but the majority of detention centers remain reticent. This is unlikely to change without a major shift in the way the criminal justice system views and handles drug use and addiction.

“Our justice system is the biggest houser of people with substance use disorders and mental health disorders in this country,” said Vakharia. “[But] they weren’t built for this…they were built to house the ‘bad guys’ in the most simple understanding of how that works and what that means. They were never built or staffed to think of the long term, nuanced needs of people with these multifaceted challenges.”

He still has to go every single day to get his medication, without which he would go into weeks of painful opioid withdrawal. My husband is one of hundreds of thousands of people across the country who rely on medications like methadone and buprenorphine to curb addiction to opioids and stay out of withdrawal, and who are now wondering whether they are going to continue to have access during the novel coronavirus pandemic, or risk being exposed to the virus by visiting facilities daily.

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The short answer is yes, facilities that prescribe and dispense these medications are continuing to run, and patients should not lose access to medications for opioid use disorder during this crisis. Methadone and buprenorphine are classified by the World Health Organization as essential medicines, which means continued access to them should be a priority. Various government agencies have issued guidelines and legal exceptions to a number of rules and regulations that usually limit access to these medications, in the hope of reducing visits to clinics.

But, of course, there’s a longer and far more complex answer as well.

Although methadone and buprenorphine treat the same disorder in relatively similar ways, they are governed by vastly different sets of rules and regulations. “On the [buprenorphine] side, the minimum you tend to see prescribed is a week. It would be easy in that case to give those patients a two-week prescription or call in an extra script with a refill. On the [methadone] side, that’s where it gets hairy,” said Zac Talbott, president of the National Alliance for Medication Assisted Recovery (NAMA-R), who also has direct experience as a patient and running facilities that provide these medicines.

Buprenorphine can be prescribed by any doctor or advanced practice registered nurse who has taken an eight-hour waiver course. That means patients can access it in a number of settings including primary care, psychiatry, gynecology, or addiction treatment facilities. Methadone, on the other hand, can only be dispensed for addiction treatment from a licensed opioid treatment provider (OTP), commonly referred to as a methadone clinic. It is governed by a complex web of rules, regulations, and policies that come from federal agencies, state authorities, and individual clinic directors. Since methadone is a better option for people with higher tolerances to opioids, and doesn’t require patients to go into withdrawal before starting it, it’s essential that both medicines are available.

“There’s going to be a broad variety in the way OTPs respond,” said Talbott. “Patients need to realize this could vary from state to state because of state authorities.”

Across the nation, State Opioid Treatment Authorities, who make state-level decisions about medications for opioid use disorder, have been looking to the federal Substance Abuse and Mental Health Services Administration (SAMHSA), for guidance on how they can respond to the novel coronavirus outbreak. This agency governs the rules around making medication available to be taken at home, instead of in a clinic (colloquially called “takehomes”), and many other methadone regulations at the federal level. Elinore F. McCance-Katz, the head of SAMHSA and the assistant secretary for mental health and substance use, told TalkPoverty by email that “SAMHSA/HHS are working in an ongoing manner with states and communities facing these issues. We have provided flexibilities to the states to help to assure that those on medications for opioid use disorders continue to get their medication. We have also been working to expand the ability to provide services by telehealth modalities wherever possible.”

Washington state, where the first confirmed cases of COVID-19 appeared in the United States, was the first state to receive the ability to dispense extended takehomes, lasting up to 14 days, to specified populations without first applying for individual permissions like providers must do normally.

“As of the 9th we have essentially put out seven different types of blanket takehome exception requests that programs can request per federal law to allow a large majority of individuals who are considered stable—and that’s determined at the discretion of each program medical director—to allow them to move beyond just daily or close to daily dosing,” said Jessica Blouse, of the Washington State Opioid Treatment Authority. “For buprenorphine there are no federal rules, so [those patients] can be moved to whatever level can be determined as safe.”

But that doesn’t mean all Washington patients will receive these benefits. Tanna, a patient who lives between the cities of Seattle and Tacoma, said she has not been offered any takehome doses. The reason, she was told, is because she has been with that provider just over three months, so she is still considered a new and therefore unstable patient—even though she transferred from another clinic where she had earned a month of takehomes.

She is also required to attend four hours of group therapy each month. Last week, her group had eight attendees and she did not notice any special precautions in place due to the virus.

“The only accommodation they’ve made [in the clinic] is at the dosing window there’s now hand sanitizer, the trash is moved a little bit, nurses wear gloves, and the [dosing] window screen is lowered,” she said.

On March 16, SAMHSA updated its guidelines specifying that all states with declared states of emergency could request blanket exceptions in order to provide stable patients with 28 days of takehome medication, and 14 days of takehome medication for patients considered less stable but still able to safely handle the extra medication. In states without a declared emergency status, each clinic is eligible to apply for similar exceptions for their patients.

The updated guidelines from SAMHSA allow states and providers greater flexibility to dispense takehome medication—but that does not mean that every clinic will utilize that flexibility to its fullest extent, nor that they will apply it to each patient.

“It may come down to the fact that patients will need to be given 14 day supplies,” said Mark Parrino, president of the American Association for the Treatment of Opioid Dependence. “However it should be case by case …We want to let people quarantine to clearly stop the spread of the disease, [but] remember we are dealing with opioids. Opioids in the hands of unstable patients can be dangerous. We don’t want to flood the community with a lot of methadone in the hands of unstable patients who may not be able to deal with the fact that suddenly they have a two-week supply.”

“People who are least likely to get takehomes are people who are new to treatment and people who have unstable housing, unstable psychosocial situations, people who might be continuing to use other substances, people with underlying health concerns; things that mean they have instability in their life. I would argue they are the people who should get takehomes immediately,” said Keith Brown, a harm reduction advocate currently working at the county level in Schenectady, New York on the COVID-19 response. “This is going to get into the argument about which is more dangerous, giving people takehomes they might sell or whatever—but in a public health crisis, people are going to have to make determinations about what makes sense. Having a few hundred people come into a clinic every day is a transmission nightmare.”

It’s impossible to know what every single state and clinic will do with their expanded discretion. Reports coming in from patients and providers indicate the response is as varied as opinions on addiction.

Justine Waldman, the medical director of REACH, a harm reduction-based buprenorphine clinic in Ithaca, New York, has begun offering one and two month scripts to her buprenorphine patients, giving longer scripts to those who have a harder time getting in to the office or who have a history of missing appointments. Her emphasis is on access and patient health over surveillance. The caveat, she stressed, is that this is an entirely new situation that is evolving each day.

“We might decide tomorrow that the way we’re doing it now isn’t working. We are really having to come together and take it day by day,” she said.

Jana Burson, who is the medical director of an OTP in North Carolina, said that while her clinic is not giving most patients extended takehomes, they are utilizing measures to help keep the facility sanitized, and to enforce social distancing while patients are in the building. For example, the lobby chairs have been spaced to be at least six feet apart, and some counselors with smaller offices are moving individual counseling sessions to larger rooms. They are aggressively disinfecting chairs, door handles, countertops, and other shared surfaces.

Vanessa, a patient in North Carolina, reported that her clinic was not dispensing any extra takehomes. She normally receives takehomes for Saturday, Sunday, and Monday, but was called in this Monday for a drug test and bottle check, a practice observed by some clinics in which they count patients’ takehome bottles. She described her clinic as “really business as usual” besides seeing staff taking patient temperatures. She noted that her temperature was not taken when she stopped by for the drug test. On Thursday morning she texted me an update that she was going to be given seven takehomes, but would have to pay for them out of pocket.

Stephanie, a patient in Pennsylvania, says she has continued to receive her regular six takehomes, but that group meetings and individual counseling sessions have been canceled until further notice. When she pressed for more information, her counselor replied that for the clinic to shut down “it would have to be the end of the world and there would be zombies,” but conceded that they were giving some extra takehomes to medically fragile patients.

Emily, who has hepatitis C, has not been offered any takehome doses by her Lexington, Ky., clinic, but reported that all patients are being stopped upon entering the building and questioned about potential symptoms. People who report feeling unwell are dosed from their cars, and only five patients are being allowed to enter the building at a time. Groups have been canceled, and individual counseling sessions are being done over the phone.

Samantha, a pregnant patient in Central Florida, reported that she was given 13 takehomes and had a doctor’s appointment canceled so she would not have to go in on an extra day.

In South Florida, my husband Ricardo still goes in for dosing every day, but told me his clinic was advising patients to be prepared to pay two weeks in advance should the need for two weeks of takehomes arise. For my husband, that means shelling out $224. For patients at other clinics, the price can vary in either direction, but not typically by much.

My husband’s experience highlights another concern facing patients on these medications. For some, extended scripts mean more money up front. Some methadone patients who pay out of pocket are only able to do so daily, relying on cash tips or weekly paychecks to pay for their medicine. Buprenorphine patients who are used to paying for one or two weeks at a time might not have additional funds for a month-long script. Patients whose medications are covered by grants or insurance sometimes have caps on the amount of doses that can be covered at one time, leaving them to pay out of pocket for extra doses. If they can’t pay, clinics are not required to dose them.

Because buprenorphine prescribing is not burdened with as many stringent regulations as methadone, it is easier for providers to adhere to social distancing recommendations while still keeping patients appropriately medicated. Many providers have reverted to telehealth. On March 17, the Secretary of Health and Human Services lifted restrictions on telemedicine practices that prevented Medicare patients from engaging by using cell phones in homes or shelters. On the same day, the Drug Enforcement Administration also waived requirements that patients starting on buprenorphine have an initial in-person visit, temporarily allowing new buprenorphine patients to engage via telemedicine from the start.

But even with these changes, economically disenfranchised patients may struggle to utilize telehealth options. “Not all of my patients have the right smartphones to do telehealth, or the minutes. When I asked them about doing telehealth, they said no way,” said Waldman.

Like Talbott stressed, the response to this crisis is going to vary between states and clinics, with wide discretion placed in the hands of prescribers and medical directors. It is a situation that is changing by the day, as states and counties continue to evaluate the impact of COVID-19 in their communities and how they wish to respond.

“I think my biggest duty right now is to reassure patients that they will not be abandoned,” said Burson.

Correction: An earlier version of this articles stated that all registered nurses were able to prescribe buprenorphine. Only advance practice registered nurses can prescribe that medication.

The bill seeks to make three major changes: It would define illicit drug use during pregnancy as child abuse regardless of actual harm to the infant; remove the state’s obligation to engage in family reunification efforts when a child was exposed to drugs; and significantly shorten the amount of time it takes to begin terminating parental rights.

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Although the bill’s stated purpose is the protection of infants, opponents say it does the exact opposite: Separating infants from their parents causes potentially irreversible trauma to a child’s brain. In addition, this type of bill deters pregnant drug users from seeking much-needed medical care for fear of punishment, and denies families the resources to heal from addiction and parent their children to their best capacities.

The North Carolina Urban Survivor’s Union, a harm reduction organization dedicated to protecting the rights of drug users in North Carolina, is doing everything they can to stop this bill from becoming law. They are reaching out to senators, gathering signatories on a letter of opposition (which I joined), and preparing to implore the governor to veto it, failing efforts to stop it from passing. To them and many other harm reduction and reproductive rights advocates, this bill represents a growing national trend to use fear-mongering as a basis for stripping pregnant people of crucial rights, even well beyond pregnancy.

Aly Peeler, advocacy coordinator for the North Carolina Urban Survivor’s Union, notes that although the bill is written to target drug users, it has the potential to affect a much larger population: “It opens the door for prosecuting people who can get pregnant for anything that can harm a fetus. What if you’re not exercising enough, what if you don’t have healthcare when we know that prenatal care is the biggest determinant of fetal health? We are really invested in stopping the bill.”

Allowing the state to define in utero substance exposure as child neglect would permit child services to remove newborn infants from their parents’ custody at birth. Should this pass, North Carolina would join 23 other states in defining prenatal substance exposure as civil child maltreatment. This has a ripple effect: A recent study from the RAND corporation discovered that areas with punitive policies toward drug use during pregnancy, such as conflating it with civil or criminal child maltreatment, saw higher rates of infant withdrawal. Patients who fear being punished for using drugs avoid medical care, whether that means continuing to use drugs instead of engaging in treatment, or avoiding prenatal care altogether.

It is a measure that invites a host of problems, including the traumatic interruption of the dyad between a birthing parent and newborn. Contact between newborns and the parent who birthed them is crucial during the first days of life; this is especially true for infants who experience withdrawal from substances they were exposed to during pregnancy, whether or not those substances were prescribed and taken as recommended. Nursing and skin-to-skin contact have been shown to reduce symptoms of neonatal abstinence syndrome (NAS), or infant withdrawal.

Many hospitals around the country have begun to change their NAS protocols to be more inclusive of families, implementing “mother as medicine” approaches to treating withdrawal symptoms that have led to dramatic decreases in the amount of time infants diagnosed with NAS require medical intervention. The University of North Carolina Children’s Hospital-Chapel Hill recently implemented a new approach to treating NAS called “Eat, Sleep, Console,” which heavily integrates familial support as part of the treatment for infant opioid withdrawal. House Bill 918, however, would undermine that medicine by denying parents access to their newborns, potentially even while the baby is still in the hospital, despite the new protocol’s positive outcomes.

The absolutist attitude toward drug addiction appears to favor stigma over science. It states that in order for a substance exposure-based neglect charge to be substantiated, child services must be able to demonstrate that the parent is “unable to discharge parental responsibilities due to a history of chronic drug abuse.” This would allow a parent’s history of addiction to be weaponized against them, something which is generally not done with other medical conditions unless there is a similar element of stigma involved, such as that which is seen in some cases of intellectual or physical disabilities.

It also opens the door to using addiction treatment history as evidence of an inability to parent. Addiction is defined as a chronic relapsing disorder. It is not uncommon for patients to attend more than one treatment program before achieving long-term remission, or to require long-term medication management with methadone or buprenorphine in the case of opioid addiction. When these histories become confused with the definition of parental fitness, it labels people with substance use disorders as undeserving to parent simply because of their condition.

In an interview for a story published by The Appeal, obstetrician and addiction medicine physician Mishka Terplan described recovery as “finding community connection, purpose, and meaning…Motherhood fits right into that, and yet we have this system that has labeled certain people and populations as being less deserving of that than others, so we are going to even take that away from them, or make it yet another battle in a grossly unfair universe.”

Stating that child services is not required to engage in reunification efforts further codifies this dismissive attitude toward people with substance use disorders. Normally, when a child welfare department opens a case on a parent that involves the removal of a child from the home, the department is required to pursue reunification efforts before moving to forcibly adopt the child to another family.

This means that the department has an obligation to provide referrals and financial assistance for any services the parent is required to complete in order to regain custody. In cases that involve parental drug use, this typically means that the child welfare department must provide timely and appropriate referrals for addiction treatment, and often must also cover the costs of such treatment. But North Carolina’s new bill would remove this burden from the state in cases that involve “exposure to nonmedical substances in utero.”

“[A pregnant person with an untreated substance use disorder] can’t stop using [solely due to pregnancy] because that’s one of the defining features of having a use disorder, and people with a use disorder — they need treatment,” said Terplan, describing with eloquent simplicity the inherent injustice of removing a child due to parental drug addiction, then refusing to provide treatment.

Amber Khan, a senior staff attorney at National Advocates for Pregnant Women (NAPW), has helped oppose bills like this in the past, like a 2017 bill that made substance use during pregnancy civil child neglect in Kentucky and forced mothers to enroll in drug treatment within 90 days of giving birth or face termination of parental rights. Khan said these bills “are counter-intuitive and dangerous and based on misinformation. They certainly do not address a substance use disorder. If the concern is a parent’s substance use disorder, these bills create a punitive system but don’t increase funding for care.”

Finally, North Carolina’s bill also decreases the amount of time it takes to permanently separate parent and child by terminating parental rights, an act that has been dubbed the “civil death penalty.” Currently, federal legislation known as the Adoption and Safe Families Act (ASFA) requires states to file for termination of parental rights when a child has been in foster care for 15 of the past 22 months (it does not necessarily apply in situations of kinship care, when children are living with relatives). Some states have opted to shorten that time, and if HB 918 passes, North Carolina will join them. The bill will shorten the requirement to one year. It also gives foster parents the same rights as relatives, allowing them to petition for custody after only nine months.

“People don’t understand substance use,” said Louise Vincent, the executive director of the North Carolina Urban Survivor’s Union. “I find bills like this really manipulative…You start talking about pregnant women using drugs and people lose their mind. People don’t understand that love doesn’t cure addiction.”

Compounding all of this is the fact that these issues will not be faced by all populations equally. In North Carolina, for example, Black children comprise 33 percent of the foster care population, but only 23 percent of the state’s total population. This law would give the system further leeway to discriminate by race and class, issues already embedded into the child welfare system.

“We know that poor women and women of color are more likely to be suspected of drug use, so they’re more likely to be screened and more likely to be reported,” said Peeler. “The bill is really worrying partially because everyone really values trusting and confidentiality with their doctors and it wouldn’t afford that to people who can get pregnant.”

When legislation perpetuates the idea that addiction can be a chronic relapsing medical condition up until the point of pregnancy — when it becomes a moral failing and representative of a lack of appropriate maternal love — it fails to protect the community, which should be the basic function of the law. HB 918 and other similar laws defy science in favor of stigma and move the government one step closer to repealing reproductive agency in the United States. And, of course, it creates a new avenue for punishing drug users even while the criminal justice system finally, albeit slowly, begins to recognize that punitive measures are ineffective against addiction.

“This is certainly another part of the business as usual for the drug war,” emphasized Vincent.

“I understand the sheer panic of not knowing what to do, and you want to get your kid off the street because you really honestly believe they’re going to die,” said Cochran. “But I had a thought that, you know, if my daughter gets arrested, she’s gonna have a record.”

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The concepts of “enabling,” “rock bottom,” and other punitive approaches toward addiction are mainstays of the 12 step programs that continue to dominate recovery culture despite a lack of scientific evidence backing their efficacy. It’s not uncommon for parents of people in the throes of addiction to feel compelled to call the police on their loved one, pray for their incarceration, or feel relief when their loved one gets locked up. Cochran still encounters the mentality frequently in “Moms for All Paths to Recovery,” an arm of her nonprofit “Heart of a Warrior Woman,” dedicated to disseminating the harm reduction tools and tenets she wished had been more available when she was desperate for ways to help her child.

“In that moment, [parents] say nothing else is working,” explained Cochran. “They need a reprieve and somehow they think no matter what anyone has told them, [their child’s incarceration] gives them a reprieve.”

Parents, however, are not the only people who uphold the myth that incarceration benefits people struggling with addiction. Many people in recovery credit incarceration with their turnaround. It’s not uncommon to hear people say they would never have stopped using if they hadn’t gotten locked up, or that detoxing felt psychologically easier in jail, where they knew they couldn’t get a hit. Amanda Mansur, a restaurant server and mother living in Massachusetts, told TalkPoverty over the phone that, in retrospect, being incarcerated was a “positive experience.”

“It taught me…about gratitude. You don’t realize how good you have it until you lose everything,” said Mansur.

But incarceration is highly traumatic and embedded with both short- and long-term negative consequences. In the long term, convictions, especially felonies, can follow people for years after their release from jail or prison. People with felony drug convictions face difficulties renting homes, gaining employment, and even accessing public benefits.

Most states no longer enforce a lifetime ban on public benefits like food assistance and cash benefits for families with children, but many still impose temporary bans or reinstatement requirements outside of their criminal sentence. That can mean drug testing, which is costly, invasive, and not always accurate; the more common, less expensive urine drug tests, for example, are prone to false positives, which can result from the use of over-the-counter medicines or even edible poppy seeds.

The negative consequences of incarceration are compounded for people of color. Members of Black and Latinx communities are more likely to be incarcerated for drugs, and one in nine Black children has an incarcerated parent, as opposed to one out of every 57 white children. One study conducted in New York City found that Black men with criminal backgrounds faced harsher employment discrimination than white men with similar convictions. One out of every 13 Black Americans will lose voting rights in their lifetime due to felony disenfranchisement. Over 250,000 immigrants have been deported as the result of drug charges since 2007, according to data compiled by the Drug Policy Alliance.

But all of these consequences hinge on the assumption that a person survives the ordeal of incarceration. For people who are addicted to drugs, survival is not guaranteed.

“Any time someone has to use drugs in a way that’s secret, that’s hidden, that’s rushed, that’s not around people, that’s not in a safe secure network where you can get help, you see increased harms,” said Kim Sue, the medical director of the Harm Reduction Coalition, who also performs clinical work at Rikers Island Correctional Facility and recently published a book titled “Getting Wrecked: Women, Incarceration, and the American Opioid Crisis,” that examines the use of methadone and buprenorphine within jails and prisons. Those harms can include increased rates of infections and diseases like HIV and Hep C that can result from sharing syringes and other equipment.

Those harms can also manifest as death due to withdrawal. Although opioid withdrawal is not conventionally considered fatal among otherwise healthy adults, a number of people have been found dead in cells across the country. In 2017, Mother Jones reported that although nobody is tracking how many of these deaths are taking place, 20 lawsuits were filed against United States correctional facilities between 2014 and 2016 in response to alleged opioid withdrawal-related deaths. Withdrawal-related dehydration is often cited as a primary factor in these deaths. In more than one of these cases, distressed inmates reported concerns for their life to family members over the phone, or begged staff for water and medical care in earshot of their cellmates. Surveillance cameras caught the excruciating withdrawal and death of a 32-year old Michigan man who was in addiction treatment when he was arrested and sentenced to 30 days in jail for failing to pay a driving ticket.

“If you’re doing a lot of vomiting or a lot of diarrhea…[that] can lead to different electrolyte disturbances which can affect cardiac function, leading to cardiac arrest,” explained Sue, who also noted that many times, medically untrained guards are the only people available to assist incarcerated people in withdrawal. She added that even when inmates are transferred to medical units, most facilities do not have doctors on site full time.

There is a growing awareness among criminal justice authorities that medications used to treat opioid use disorder, like methadone and buprenorphine, are essential for people struggling with opioid addiction. Often prompted by lawsuits, several facilities have begun inducting incoming inmates who are addicted to opioids, or allowing people already prescribed the medications to continue taking them. Regardless, the majority of facilities do not allow the use of these medications, except for people who are pregnant (even then, patients are typically tapered off after pregnancy, sometimes while still recovering from childbirth).

This means that most people who are incarcerated while addicted to opioids will undergo forcible detox. In some cases, even when people are given methadone or buprenorphine as a withdrawal aid or for maintenance while inside, they are not given adequate referrals on the outside. In some areas of the country, these medications are difficult to access or too expensive to pay for out of pocket. For people addicted to opioids, being forcibly detoxed without adequate access to evidence-based treatment like methadone or buprenorphine can be dangerous upon release because it leaves them at risk of relapse, but without their former tolerance. Opioid-addicted people who have been released from incarceration are at significantly heightened risk of overdose in their first several weeks back in the community.

Even in facilities where evidence-based treatment is offered, the risk of trauma remains ever-present. “[People who are incarcerated] get killed by staff, they get killed by other inmates…they get raped, they get sodomized,” said Dinah Ortiz, a vocal harm reductionist and parent advocate at a New York defense firm. “You don’t know how many rapes I saw, you don’t know how many women I saw sodomized during my little six months in Rikers.”

“If you’re the kind of person who needs to take a walk when you’re feeling stressed, you cannot do that [while incarcerated]. If you’re anxious around other people who are loud or fighting, you can’t avoid that. The environment is not therapeutic,” said Jonathan Giftos, who worked as the clinical director of substance use treatment for the Division of Correctional Health Services at Rikers Island. “A lot of the health side works hard to mitigate the harms of the environment, but you can only do so much.”

Even when formerly incarcerated people praise their experience behind bars, they also often share stories of trauma and relapse that didn’t end with jail or prison, but with evidence-based care that they accessed in the community. Mansur, for example, admitted that she relapsed shortly after her release, and continued using for three years before achieving sobriety with the help of a self-referred buprenorphine prescription. She detailed that she’s had difficulty renting apartments because of her conviction, which was for theft that she committed in order to pay for drugs. She’s also unable to work in the medical field or with vulnerable populations like children or the elderly, which she finds disappointing because she had studied psychology in college.

“Maybe if I had been introduced to medication-assisted treatment previously from going to jail, maybe that would have prevented [the need to be arrested],” Mansur stated, before acknowledging that her addiction became “much worse” after she was released from jail.

“If your [child] is out of control there are ways to go about [helping them] that do not involve incarceration,” advised Ortiz. “If you have that mentality that I prefer they be in jail, then that’s the mentality that they are going to have, too.”

Ride any train in the city and you’re bound to see the signs — wallpapered across stations and on the insides of trains — warning passengers that they’re better off paying the $2.75 fare than the $100 fine, and directing them to use turnstiles to enter and exit the tunnels, as opposed to gates, which can easily be held open and passed through without paying. If you ride in the Bronx, Brooklyn, or Queens, you’re bound to see fare checks taking place, or to be subject to one yourself.

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Here’s how it happened to me: I approached one of the Metro Transit Authority (MTA) automated ticketing booths at LaGuardia Airport and purchased a fare card with something like 30 dollars on it. When I got on the bus, amidst a pretty typical New York crowd, I didn’t see anywhere to swipe my card. But people were cramming in behind me, so I shrugged it off. I could figure it out when I got off, or pay the same fare at the next stop, where I would have been using a receipt had this fare gone through. In any case, my money had transferred from my bank account over to the MTA — so good enough, right?

At the bus stop in Queens, we were greeted by two burly police officers in full cop regalia — guns and batons at hip, the whole show. There was no crowded shoving now; everyone stepped off single file, flashing a paper receipt to the cops before walking off. A paper receipt I didn’t have. I showed the officers my Metro card and explained the steps I’d taken to pay the MTA. One of them told me I had gone to the wrong machine. He pointed at the display of machines behind us. When I told him I used a machine like that, he replied that no I hadn’t, but the one that I used was almost the same. Almost the same, but not right. Then his partner demanded my ID card and fined me $100.

What happened to me in 2018 is part of a city-wide crackdown by the Metro Transit Authority (MTA) on fare evasion. The crackdown is supposedly aimed at preventing the MTA from hemorrhaging hundreds of millions of dollars they say are lost to people skipping fares. In 2018, the MTA reported that loss at $225 million, but the Office of the Inspector General thinks that was an undercount, and loss estimates for 2019 are closer to $300 million. While subway fare evasions are certainly a major contributor to these financial losses, it’s bus routes that are taking the biggest hit, including Select Service routes used to connect subway systems, like the one I was riding from the airport.

But as my experience illustrates, the crackdown behaves like a Kafka-esque authoritarian overreach. In the best circumstances, authorities fine people for giving money to the MTA through the wrong slot, or for just being unfamiliar with the local nuances of the payment system, which is especially absurd in a city with as much tourism as New York. In the worst light, the fare evasion crackdown targets the city’s most vulnerable populations, criminalizing poverty and giving New York police another excuse to fine and jail Black and Brown people.

The NYPD has been reticent to reveal racial and ethnic demographic information about who is being fined, even resulting in a lawsuit in 2018. But data now available show summonses are being disproportionately distributed to Black and Hispanic (their language) populations. In the second quarter of 2019, 15,280 summonses were issued. Of those, 6,110 were Black, and 5,154 were Hispanic. In contrast, only 2,586 were issued to passengers identified as white, even though non-Hispanic whites comprise nearly half of New York City’s population. 712 summonses were issued to people under the age of 18.

Tickets aren’t the only consequence of fare enforcement stops. Manhattan district attorney Cyrus Vance announced in 2017 that his office would stop prosecuting for “theft of services” on public transportation. The decriminalization of fare evasion in New York led to a sharp decline in arrests related to fare evasion, which saw nearly 10,000 people jailed in 2016.

But as the recent high profile arrest of nineteen-year-old Adrian Napier shows, arrests are still happening — and mostly to Black men. People with outstanding warrants are at particularly high risk of being arrested. But bystanders have been posting recordings on social media of violent subway arrests of “unruly” fare beaters. Reports from around the city are also catching officers stationed around transportation stops making arrests for reasons like unauthorized sales of candy and sweets. In the second quarter of 2019, NYPD reported 682 arrests related to fare evasion. Of those, 414 were Black. Only 76 were white. Ten were minors. The overwhelming majority of people arrested were identified as male, indicating that the new campaign is functioning as yet another excuse for the NYPD to jail men with black and brown skin.

While all this has been going on in the name of saving money, use of public transportation in New York has taken a sharp decline. Subway rides had seen an increase until 2016, when ridership dropped slightly. After 2017, both buses and subways saw a dramatic slope in their ridership stats, with bus ridership dropping by 5.1 percent. In 2018, subway and bus ridership dropped by 2.1 and 4.4 percent, respectively.

Fare evasion is not unique to New York City, but not every city views it as a priority police matter. In Seattle, where I grew up, King County Metro launched a new Fare Violation Program. When I was living in Seattle, prior to the beginning of 2018, bus savvy Seattle residents knew that travels taking place in North Seattle through Downtown would probably not be interrupted by fare enforcement agents. Travel South toward the airport, and you’d need to show proof of payment. This was very much delineated by racial lines. Neighborhoods in North Seattle are divided into affluent sections and very poor areas, but all of them are mostly white. Gentrification has begun to reshape the city, but the South-end has historically been a mostly Black and Latino area. Fare enforcement agents usually began entering just before the International District, which houses a mostly Asian population and several low-income housing complexes. All in all, Seattle’s fare enforcement protocols appeared as racially biased as those in New York. Now, Seattle seems to be trying to correct some of these issues by scaling back punitive measures against fare beaters.

Previously, fare evasion could result in a $124 fine that was handled in civil court, although riders would usually receive one or two warnings before getting the fine. Now, fines are $50, and if paid within 90 days they will be further reduced to $25. Riders also have the option to pay that $25 toward their own ORCA card (Seattle’s kitschy transit card that, yes, does have an orca whale on it). They can also perform two hours of community service or enroll in one of the reduced fare programs offered by the city. The program that serves the largest population is ORCA Lift — which I am still enrolled in because enrollment lasts five years — and is available to all Seattle residents who meet their low-income requirements. Indigent riders also have the option to appeal the citation, which may be overturned based on “extenuating circumstances.”

Seattle’s 2019 program comes on the heels of a similar program rolled out in Portland, Oregon, in 2018. In 2018, a Multnomah County Circuit Court Judge ruled that random fare checks on TriMet, Portland’s public buses, were unconstitutional. The lawsuit, spearheaded by the American Civil Liberties Union (ACLU), was incited by an incident involving Ana Del Rocio, one of the only Latina members of the David Douglas school board. She was arrested after refusing to supply identification, which is her right under state law. The ruling means that TriMet will no longer be able to perform random fare checks, similar to the kind I was subject to in New York City. TriMet also began offering community service and enrollment in reduced fare programs in lieu of paying fines, as well as tiered fines. Repeat offenders will receive increased fines or community service hours before being banned from services for 90 days.

Washington, D.C., recently decriminalized fare evasion and reduced the whopping $300 fine to $100. This was after the Washington Lawyer’s Committee released findings from a data analysis that discovered 91 percent of fare evasion citations were issued to Black riders, even though just under half the population of D.C. is Black. 46 percent of citations were issued to passengers under the age of 25, and one was only seven years old.

But the most radical change comes out of Kansas City, Missouri, which is now poised to offer free city-wide public buses. In December 2019, the city council unanimously voted to pass a resolution that will make public transportation free, once the next fiscal year budget is approved and designs are put in place. The measure, called Zero Fare Transit, is estimated to cost $8 million. This will make it the first major U.S. city to offer free city-wide public transportation in the 21^st century, though a few other cities experimented with it unsuccessfully in the 20^th century. The smaller city of Chapel Hill, North Carolina, which has a population of approximately 60,000 and operates just 121 buses, has offered free public transit since 2002.

When I returned to New York in December 2019, the first thing I did was load my Metro Card. During a trip downtown to meet a friend for coffee, I swiped my card, but the turnstile wouldn’t budge. The machine directed me to swipe again at the same turnstile, but when I did — no budge. I continued to swipe my card and receive the same error message directing me to swipe again. Finally, exasperated, I moved on to another turnstile. This time it worked — but a swipe at the other turnstile had also been deducted.

Does that mean I can now send MTA a $100 summons?

In 2020, Allegheny will begin applying a similar algorithm to every family that gives birth in the county, with the goal of linking families in need to supportive services before a maltreatment case is opened. But some critics insist that it will be just another way for government to police the poor.

The new program is called “Hello Baby.” The plan is to eventually apply it across the county, but the January launch will begin in only a select few hospitals. Like the Allegheny Family Screening Tool, the Hello Baby algorithm analyzes family data to apply an individual family score.

Emily Putnam-Hornstein, who helped design both programs, told TalkPoverty that Hello Baby uses slightly different data than the child maltreatment algorithm, which was criticized for targeting poor families because much of the data used was available only for people who used public services.

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“This is a universal program,” explained Putnam-Hornstein. “In the [child services] model the county was being forced to make a decision after an allegation had been received; in this case we’re taking about more proactively using data … so we wanted that to be built around universally available data.”

But these exclusions don’t guarantee that the data will not end up targeting low-income families again. “They rely on data where the county has the potential to have records for every family,” said Richard Wexler, the executive director of the National Coalition for Child Protection Reform. “The county acknowledges they will probably use data from [Child Protective Services], homeless services, and the criminal justice system, so yes, theoretically everyone can be in that, but we know who’s really going to be in it.”

An overview provided by the county online cites “birth records, child welfare records, homelessness, jail/juvenile probation records” as some of the “available service data” incorporated into the predictive risk algorithm, indicating that Wexler’s assessment was absolutely correct. Although that data is potentially available about anyone, several of these systems are known to disproportionately involve low-income people and people of color.

Putnam-Hornstein said via email that the Hello Baby process is “truly voluntary from start to finish.” A family can choose to drop-out of the program or discontinue services at any time.

The option to drop out will be presented at the hospital, when families are first told about the program. A second notification, and chance to opt-out, will then be made by postcard. If a family doesn’t respond to the postcard, they are automatically included in the next phase of the program, which involves running available data through the system to determine how much social support each family needs.

According to Putnam-Hornstein, scores will be generated about four to six weeks after birth for families that do not choose to opt out (or who are too busy to realize they want to). Once a family is scored, what happens next varies based on which of three tiers they fall into.

Under the “universal” tier, the most basic approach, families receive mail notifications about resources available throughout the county. Families grouped in the second, “family support,” tier will receive a visit from a community outreach provider and an invitation to join one of 28 Family Support Centers located around the city of Pittsburgh.

The “priority” tier engages families with a two-person team made up of a peer-support specialist and a social worker who will work closely with the families to identify their needs and partner them with appropriate providers. It is designed to be an individualized program that grants families access to the full range of support services available on a case-by-case basis. That could mean helping a parent navigate the complexities of applying for housing assistance or ensuring timely placement in a substance use treatment program. The county said in its promotional material — which was reinforced by Putnam-Hornstein over the phone and by email — that choosing not to engage with any aspect of the program will not lead to any kind of punitive action.

But parents who need supportive services still have reasons to fear intervention from child services. The reality is that any program putting families in contact with social service and medical providers means, by default, also putting those families at greater risk of being reported to child services by placing them in more frequent contact with mandated reporters.

A mandated reporter is someone who is legally required to report any suspicions of child maltreatment they encounter. The intention is to ensure timely detection of as much child abuse and neglect as possible, but data have not shown that an uptick in mandatory reporting equates to more child safety.

In Pennsylvania, nearly anyone who regularly interacts with children in a professional or semi-professional capacity is legally considered a mandated reporter. An unfortunate side-effect of the mandated reporter system is that even though a referral program like Hello Baby is not directly involved with child services, participating families will always be haunted by the possibility of coming under investigation.

Putnam-Hornstein assured that family’s scores will not be retained or shared with child services, even for families under investigation — but noted that “it is possible that child welfare workers could infer the level of risk if the family has voluntarily agreed to participate in Hello Baby Priority services and a child welfare worker learned that when gathering family history.”

It’s clear that the new program is not designed to get families involved with child services, although it is spearheaded by the Department of Human Services, which oversees the Office of Children, Youth, and Families that conducts child maltreatment investigations and responses. Rather, Hello Baby was created with the goal of offering a more equitable way to expedite service referrals for families with new children who need them.

“Universalizing the assessment of social needs at birth is the only way to avoid discrimination,” said Mishka Terplan, an obstetrician and addiction medicine physician, who was not talking specifically about the Hello Baby program. He observed that patients with obvious social needs, such as those suffering from acute addiction, were often screened and referred for other issues, like postpartum depression or housing assistance, while other parents’ needs were going undetected and unaddressed. “That seemed unfair,” he lamented. Terplan believes that universal screening programs would eliminate both the disparity between services rendered, and reduce the stigma attached to needing behavioral health treatment and other social supports.

Hello Baby’s creators hope that offering families these programs before there is a child maltreatment complaint can help keep them out of the system altogether. But by using imbalanced data points like child welfare history, homeless services, and county prison history to auto-generate scores, it assumes poverty as the main basis for family need. While poverty does generate certain needs, it is not the only indicator for the whole range of unique social supports that new parents require, such as mental health screening or child care assistance.

A system that continues to embed data that target the poor may only end up automating the social inequities that already exist, while placing vulnerable families under increased scrutiny by mandated reporters for the child welfare system — even if it intends to serve as a universal screening process that helps families avoid punitive interventions.

“As long as the system confuses poverty for neglect, any form of such screening is extremely dangerous,” said Wexler.

I learned this early on in my case, which began in April 2018. The services required for me to reunify with my daughters included trauma-based individual therapy, a psychological assessment, substance use treatment, and parenting classes. I remember going to the first of these, my psychological assessment, and spending 20 minutes in the office arguing over paperwork.

In order to complete the mandatory assessment, I had to sign a consent form that would allow the assessors to send their findings to child services. But when I asked what their “findings” included, it was not simply a diagnosis or treatment recommendations. Instead, it could be the full readout of the evaluation.

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Everything I said during this invasive and highly personal evaluation would be sent to my caseworker, his boss, the state attorney, the guardian ad litem and her attorney, my attorney, my husband’s attorney (and by proxy my husband), and the judge. Any time my caseworker was changed, which had happened once already and would happen two more times, the new stranger would also be privy to the contents of my psychological evaluation.

But the service was mandated. Without this evaluation, I was not allowed to engage in therapy, substance use treatment, or parenting classes. So I had to do it.

This is standard fare for families involved with the child welfare system. It focuses on the collection of parents’ information, and control over what those parents do and how they behave, not, as proponents of the system fervently claim, on ensuring the safety of children. Like probation and parole, child welfare involvement becomes one more way for the government to keep tabs on people.

As it would turn out, the report would not be a transcript of my evaluation. Rather, it was an interpretation, in which the evaluator handpicked which details to include. She described me as eccentrically dressed. (I had worn a floral dress and flats, but have visible tattoos and a facial piercing that can’t be removed.) She detailed that sometimes I answered questions right away, and sometimes I paused to answer them, which sounds normal enough but seemed sinister and awkward when inserted in the context of the psychological evaluation. She wrote that I suffered from insomnia, even though I’d repeatedly told her I was tired on that day specifically because I was worried about my husband, who had been hospitalized earlier that week. She generalized my history with drug use to make it appear that I had been addicted to heroin since I was a teenager, which is not the case.

In the end, the recommendations didn’t include anything besides the talk therapy I’d already been mandated to take — but the inclusion of all her other highly subjective details handed my opposition a slew of quotes they could use to describe me as eccentric, erratic, and ill-equipped to handle the daily realities of parenting.

It was an evaluation I had no choice but to attend, which should have been a doorway to resources and help for my PTSD. Instead, it served as an intelligence-gathering exercise for the people separating me from my two young daughters.

Other parents have experienced similar issues with the services that are supposedly in place to help them. Kim, a mother in Alabama who asked that her last name not be shared, has been involved with child services since January 2019. Kim’s case was triggered by her arrest when she failed to appear for a court date, but she says the crime she is accused of was actually committed by her abusive partner, who forced her to take the blame by threatening her life.

When her caseworker learned Kim was experiencing domestic violence, she told Kim to move into a shelter. Which she did, but only for about a month. She said the shelter had stringent rules, which included nightly curfews and that she report her whereabouts when she left the grounds.

Kim was never told by the shelter that this information was shared with her caseworker, but she figured it out when her caseworker suddenly knew details only the shelter had. “She knew my comings and goings there. Knew when I met with the therapist, left for work; all of it,” Kim said.

“The sheer fact and status of having a child places you in a situation where you can no longer openly and honestly express what’s happening in your life to mandated reporters because you’re facing family dissolution, or, at minimum, family surveillance,” said Erin Miles-Cloud, a former parent defense attorney in New York who is now the co-founder for Movement for Family Power, a parent advocacy group. Exactly who falls under the category “mandated reporter” varies by state, but they are typically frontline workers such as nurses, doctors, therapists, and teachers, who are required by law to report any suspicions of child maltreatment. She specifically cites shelters, hospitals, and schools as some of the “biggest offenders” when it comes to reporting parents who are seeking care to child services.

While speaking with me for a story I wrote for Filter Mag about the way child services targets parents who use drugs, a nurse named Tracy Longbreak told me about her experience with the “mandatory” aspect of mandated reporting. When a mother came into her emergency department with her baby while smelling of marijuana but appearing prepared, competent, and tidy, Longbreak was told by her superiors that she had to call in the report or risk her job.

Ultimately, the best she could do was include her perceptions of the mother in her report and hope that her positive remarks would offset the accusation of neglect via marijuana intoxication (which was not yet legal in the state of Oregon, but is now).

“In North Carolina, the mandatory reporting law is around any abuse that may have taken place by the caregiver,” said Julie Owens, a survivor of domestic violence who now consults with organizations around the country advocating better practices for people who have experienced violence in the home. “The protective parents who go into domestic violence shelters—primarily mothers—are not the abuser, but unfortunately they are reported as or regarded as abusers because they haven’t reported the abuse that their children have been experiencing, and they often end up being punished or deprived of their children as a result of this.”

Put together, this all means that service providers can be forced to act as eyes and ears for child services, even when they don’t want to. But more reports doesn’t equal more child safety. In Philadelphia, for example, mandated reporting laws were drastically expanded after the Penn State child sex abuse scandal. In an article published in Pediatrics in 2017, Mical Raz wrote that “there is no indication that the increase in reporting has improved the safety of Philadelphia’s children, and there is reason to believe it may detract.” Some of these detractions included increased hotline calls resulting in an overburdened system less able to make accurate safety assessments, and a heightened risk of family separation for low-income families. Later Raz noted that “fear of reporting may prevent families from seeking help, whereas assurance of confidentiality has been shown to increase help-seeking behaviors.”

The majority of substantiated maltreatment charges in the child welfare system are for neglect, which typically means issues like lack of food, child care, or weather-appropriate clothing – things that could be fixed with better social supports or a little more money. Creating a system that encourages families to seek help should be the goal for any agency in pursuit of children’s health and safety.

But forcing more and more providers and even laypeople to report on parents whether they want to or not achieves the exact opposite of that goal. Instead, it creates a cyclical, hypocritical system in which parents are afraid to seek assistance for fear of being punished because of the issue for which they need help, then punished for not seeking that help on their own. It also harbors distrust in therapeutic situations, which renders impossible any kind of genuine recovery.

The network of surveillance that child welfare-involved parents become trapped inside will continue to harm families like mine until it is lifted and parents are allowed to seek help and engage with services without simultaneously leaking the most intimate details of their lives.

These numbers are staggering. When you consider the impact of childhood trauma — which tells us that kids who experience or witness abuse are more likely to develop a slew of physical and mental illnesses as adults — those numbers are infuriating. And baffling. Domestic violence can be hard to escape, especially for those who have been in the mire of it for years, but once kids become involved, shouldn’t that be enough motivation to leave?

It’s this question, and the assumed answer, which drives “failure to protect” laws in child welfare programs across the United States. Essentially, failure to protect laws charge a parent with not doing enough to shield their child from witnessing or experiencing abuse. Virtually every state pursues some form of failure to protect charges within the civil child welfare system. These laws are aimed at the non-abusive parent living in an abusive household. Usually, the parent has been subject to intimate partner violence. But the laws can also be used in households in which the child is the victim of one parent but not the other.

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While these laws were written with the intention of penalizing a parent who neglects the safety and/or well-being of their children, they all too often make unsafe environments even less safe by penalizing non-abusive parents living in an abusive household, and can become the basis for temporarily or permanently removing children from the home. They rarely leave room to consider the complexities of intimate partner violence, instead relying on assumptions and stereotypes that are incapable of capturing the nuanced reality of family bonds.

In January of 1999, Sharwline Nicholson decided to end her relationship with the father of her infant daughter. He lived in South Carolina, and had been crossing state lines each month to visit Nicholson and their daughter in New York. But when she ended the relationship, he responded with violence.

She called 911 and made arrangements with a friend for the care of her two children while she stayed overnight at the hospital. The next day, Nicholson was notified by the New York Administration of Children’s Services (ACS) that both of her children had been temporarily removed from her care on the basis that she had failed to protect them from witnessing the violence that had been inflicted upon her by her former partner. At the time, this was considered a form of neglect.

Nicholson would eventually win back custody of her children, but would be placed on a child maltreatment registry. This action kickstarted a lawsuit that would eventually lead the New York Court of Appeals to rule in 2004 that a parent’s inability to prevent a child from witnessing abuse could not be a sole factor for removing a child. Child welfare reform activists celebrated the decision.

“What Nicholson actually did was not just to change the attitude toward victims of domestic violence,” said David Lansner, a civil rights and family law attorney who represented the plaintiffs in the Nicholson case. “Neglect had to be shown as a serious matter; you had to show that … there was imminent danger of serious harm and not just the possibility of harm. … [Child services] and the court had to balance the harm that would result from removal against the risk of leaving the child at home, so you couldn’t just ‘take the safer course’ because removal was harmful to kids and shouldn’t be done unless it was really necessary.”

Unfortunately, New York is relatively unique in that respect; other states, lacking a case like Nicholson, still remove children for the possibility of harm that caseworkers and judges interpret by a parent’s “failure to protect” her children from being in a household where abuse takes place.

Erin Miles-Cloud, who formerly worked as a parent attorney in New York and is currently one of the co-founders of the advocacy group Movement for Family Power, explained the ways in which some of the better-resourced, urban systems can still fail families, even today. “Because New York has this middle ground of family shelters, ACS sees it as an unreasonable option to stay in a home where intimate partner violence is occurring,” she said.

What many people don’t realize is that — in New York City — parents who access a shelter as the result of domestic abuse will automatically be moved to a different borough, meaning a change in school district for their children, not to mention the loss of access to support networks, such as friends and family or trusted child care, lack of which can easily become another maltreatment charge. There’s also no guarantee as to what type of housing the family will receive or for how long. In some cases this could mean dormitory-style living for a year or longer, with no access to even a personal refrigerator.

But even the most comfortable, “home-like” shelters remain government-funded institutions — which means they come with restrictive rules, such as nightly curfews and rigid limits on how many days a parent can be away from the shelter, even to visit family. They are also a source of constant surveillance for the families housed inside. Miles-Clouds calls shelters and hospitals among the “largest offenders” when it comes to calling in new maltreatment reports, and notes that New York ACS often uses shelters as “second or third eyes on a family” when arguing a related case in court.

Because child welfare agencies self-report their data, and failure to protect  is not an independent maltreatment category in itself (these cases typically fall under the “neglect” umbrella), it is difficult to know exactly how many non-abusive parents end up being investigated because they were victims of abuse who sought help, or because their children reported being harmed by someone else in the household. But we do know that most states do not have even the mild protections enjoyed by families in New York. That means a child can be removed if the state convinces a judge they have been or will likely be psychologically harmed by witnessing the abuse.

Some states will also pursue criminal charges against victims of intimate partner violence who have children in the home. In six states – Oklahoma, Missouri, Nebraska, Nevada, South Carolina and West Virginia – non-offending parents face potential life sentences for failure to protect charges, and in Texas the maximum penalty is 99 years. Last year, the Associated Press reported on the case of Tondalao Hall, a mother whose boyfriend was sentenced to two-years time served (meaning he had already completed his jail time while waiting to be sentenced) for beating her children, including a three-month-old infant. Hall, who was never accused of harming her kids, is currently serving 30 years in prison for not calling the authorities on her boyfriend.

Latagia Copeland-Tyronce, a parental rights advocate and the founder/executive director of the National African American Families First and Preservation Association who spoke to TalkPoverty about her experience, knows first-hand how devastating it can be to be accused of not protecting children from another person’s abuse. She first faced the traumatic confusion of a failure to protect charge in Toledo, Ohio, in 2013.

She was 26 years old and had been involved in an abusive relationship for 10 years. What she did not know, however, was that her daughters’ father was also sexually abusing her three eldest girls. When one of Copeland-Tyronce’s daughters finally disclosed the abuse to her sister, she promptly contacted child services.

Copeland-Tyronce immediately left her children’s father. She also cooperated with the criminal case that would ultimately land him a 30-year prison sentence. But this was not enough for Lucas County child protective services. They claimed she had known about the abuse and had failed to protect her children both from witnessing the violence perpetrated against her, and from the sexual abuse which they had experienced.

“My children never said that I knew anything or that I was involved in the abuse and I was never charged with a crime related to the case,” countered Copeland-Tyronce.

Less than a year after the initial removal, her parental rights were terminated and all six of her daughters were adopted to other families. When she gave birth to a son in 2014, by a different father and with stable housing in place, he was also removed from her custody.

“Because I had a [termination of parental rights] TPR, failure to protect, with my daughters. No other reason,” she said. At the time, the first TPR was still under appeal.

Candis Cassioppi, a mother based in Athens, Georgia, had her youngest child removed from her in the hospital after giving birth, she told TalkPoverty. The removal was prompted by an incident of assault by her child’s father perpetrated against her during her pregnancy.

Although she initially called the police and sought medical attention — causing those injuries to become part of her medical record — she ultimately declined to press charges or testify against her abuser. After her son’s birth, this incident became a reason to claim she was failing to protect her children from harm. Now, she is court-ordered to participate in a slew of activities, including domestic violence groups and parenting classes, in the hopes of regaining custody of her infant.

Like mandated reporting laws, which require certain professionals and institutions to report suspected child maltreatment, failure to protect laws and policies are in place, purportedly, to ensure that child maltreatment does not go unreported. “If a child dies in the home because there was a batterer who was so dangerous that the victim-partner couldn’t protect [the kids] … we’re still liable to make sure that the child stays safe,” explained Mary Nichols, a now-retired administrator at Los Angeles County’s Department of Children and Family Services (DCFS), to the California Health Report in 2015.

But she also admitted in the same article that the laws are confusingly vague: “If you look up California Welfare and Institutions Code 300 and just read the definitions of ‘failure to protect,’ you can see how broad they are … [If] somebody would like to craft legislation to make it more workable, in terms of protections for domestic violence [victims], that would be great. It’s a pretty raw tool that we have.”

As the cases detailed in this article demonstrate, the reality of domestic abuse is far too complex to address with vague, generalized laws. Instead of protecting families, these blanket laws mean that parents who experience domestic violence may end up burdened by a fear of reprisal for reporting that violence. Take Cassioppi’s case, for example. Her baby was born healthy; had she not called the police and sought medical attention after being assaulted during her pregnancy, she likely would have walked out of the hospital with her newborn in arms. And Copeland-Tyronce now asserts that if she were to ever encounter intimate partner violence again, she would “not at all” feel safe calling the police for help.

Lansner said implementation and caseworker attitudes are major problems with the way domestic violence cases are handled within the child welfare system. “The caseworkers just don’t get it,” he said, adding, “the caseworker might go to the home, find the guy there in violation of a protection order and then remove the children instead of calling the police and having him arrested, which is what [the caseworker] should do.”

Parents who experience intimate partner violence also face a number of other complexities that caseworkers and judges don’t always take into consideration when charging these parents as culpable for traumatizing their kids by proxy. For example, one study found that 99 percent of domestic violence survivors had also been subject to economic abuse, a form of financial control that can leave them stranded without the resources necessary to secure independent housing or provide for their children’s basic needs. Because lack of appropriate shelter, clothing, and food also fall under the child services maltreatment category of “neglect,” this leaves many non-abusive partners trapped between the crosshairs of a failure to protect and a failure to provide charge. Either way, they’re ending up on the maltreatment registry for neglect.

By necessitating that caseworkers identify concrete harm toward a child before removing her from the home, New York has found a way to slightly balance a system designed to punish parents simply for being unfortunate enough to experience abuse. Although their system is far from perfect — as Miles-Cloud noted, it funnels parents into a less-than-ideal shelter system, and the law still does not address the caseworker bias that concerned Lansner — it provides a template which other states could use to begin the process of clarifying these laws.

Ideally, however, survivors of domestic violence should be met with compassion and provided with services that help their families heal and thrive intact. It seems, instead, that as long as failure to protect charges exist, the child welfare system will continue to promote a culture of secrecy surrounding intimate partner violence, thus validating the very abuse it claims to condemn.

I was biking to treatment three to five days a week in the Florida heat, and had no other transportation, so I wasn’t able to come in for dosing after I came down with a fever and a deep, phlegmatic cough. But I called in, emailed, and texted each day that I missed a scheduled day of treatment. At no point was I warned of an impending discharge; my counselor simply wished me well, and suggested I go to urgent care if I felt I needed it.

When I returned to treatment the next week, though, I learned that my provider, Memorial Outpatient Behavioral Health, had assumed I was skipping to use drugs. They dumped me without even a few days’ supply of my prescribed buprenorphine, upon which my body was physically dependent; a referral elsewhere; or a solid reason.

This was in spite of my having an active prescription from my doctor and a future appointment with her. I could also no longer access the psychiatric medication I was prescribed through the same provider.

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All of a sudden, without warning, I lost all of my addiction and mental health care. As shocking as these events have been, they are not uncommon. In fact, they represent a dangerous status quo among opioid addiction treatment providers across the nation, one that defies all modern research on addiction treatment and leaves patients stranded.

“It’s an old school type of thinking which came out of how we’ve treated addiction in the past, which is that abstinence is the policy, which doesn’t make sense with a chronic relapsing disease,” said Justine Waldman, the medical director for REACH, a harm-reduction oriented health hub in Ithaca, New York. “With abstinence being the policy, once the patient isn’t able to follow the policy the patient isn’t able to be part of the practice.”

Keri Ballweber, a methadone patient and recovery specialist at Point to Point Kane County, remembers being dramatically dropped from care in 2012 by Family Guidance Center, a methadone provider in Aurora, Illinois with whom she had been a patient for roughly six and a half years. In the two years prior to her discharge, she had been gradually tapering her 160 mg dose with the goal of coming fully off methadone.

“As I got lower in my taper, it began getting harder and harder to deal with the symptoms [of withdrawal],” recalled Ballweber. “I asked them for help, but their only suggestion was to go slower. It did not seem as if there was a speed slow enough to not cause me discomfort.” Family Guidance Center declined to comment for this piece; Memorial Outpatient Behavioral Health said it does not comment on specific cases, but that “our goal is to partner with all our patients and help them heal and recover.”

Ballweber eventually turned to illegally purchased diazepam, a benzodiazepine usually prescribed for anxiety, insomnia, and seizure disorders. Mixing benzos and opioids can be dangerous, but when Ballweber disclosed the use to her counselor, she was not informed about this, nor given any harm reduction tips. She asked if she could be kicked out of the program if she continued to screen positive for the non-prescribed drug, and her counselor admitted that outcome was possible, but assured her that such a drastic action would only be taken much further down the line.

The next month, Ballweber was dismissed, and tapered from her dose within a week.

“I was very sick,” said Ballweber. “I couldn’t sleep, I was having panic attacks, muscle tremors, [and] restless leg syndrome.” Eventually, she began to experience hallucinations, which she believes were the result of sleep deprivation from the withdrawal. She was admitted to the hospital for psychosis and prescribed quetapine, an anti-psychotic medication, which helped her sleep. “I had absolutely no aftercare and cutting me off from the clinic [also] cut me off from counseling,” she said.

Ballweber also recalls seeing other patients discharged or punished with medication holds for talking back to their counselors or smoking too close to the buildings. Other MAT patients around the country have reported being dropped or threatened with dismissal for reasons such as relapsing, missing care for unavoidable reasons like being incarcerated, not attending group therapy sessions, smoking marijuana, or being unable to pay.

In my case, when the clinic refused to give me my prescribed medication, leaving me in opioid withdrawal and overcome by a sense of deep confusion and hopelessness, I did eventually use. It was a bad choice, I admit that — and I told my counselor immediately. But in many ways, the clinic itself had contributed to the outcome it had initially accused me of.

I think a part of me hoped that if I gave them what they expected — a positive toxicology screen — I would get what I needed: ongoing care. Instead, I was totally shut out and sent to navigate detoxing from both my opioid-based buprenorphine and my selective serotonin reuptake inhibitor antidepressant (also dependency-producing) at home, alone, with no medical supervision or follow-up care.

Both buprenorphine and methadone are approved by a slew of licensing bodies, including the World Health Organization, as the most effective treatments for reducing harmful symptoms of opioid addiction and opioid addiction-related deaths. Although any addiction treatment plan should be tailored to the individual patient’s needs and circumstances, these medications are designed for long-term or even lifelong use, said Mary Jeanne Kreek, senior attending physician at Rockefeller University’s addictive diseases lab and part of the team that first developed methadone as a treatment for addiction, whom I interviewed while researching a story for Filter Mag. No part of best practice includes suddenly dropping patients from care for any reason — but especially not for showing symptoms of the disorder for which they are seeking care.

“I’m afraid for any patient who has to get off MAT before they’re ready,” added Kreek.

For patients who relapse, Waldman confirmed the best practice is to “keep the patient on buprenorphine.”

At REACH, she noted, patients are not expected to adhere to an abstinence-only model of care. When patients continue to relapse, their practitioners sit down and ask the patients what they need and how they can help.

“There have only been two patients that I can think of who weren’t able to get care at REACH,” she said, “and they were displaying more violent behavior that just didn’t feel safe within our workplace.” She makes a point to add that REACH ensured those patients were placed with a more appropriate provider.

Losing access to medication also affected my ongoing child services case, switching it from a reunification track to one in which my children will be given up for adoption due to an assumption by my caseworkers and my judge that I am at fault for “failing” treatment. This doesn’t guarantee that I will permanently lose my two young daughters, but it makes it a much tougher battle to win. Now, I am no longer entitled to the little assistance I was receiving from my local child welfare agency in obtaining the services I need to reunify with my daughters. They are oriented toward settling my daughters into permanency with their grandparents.

When I told my counselor that this would happen if they dropped me from care, she responded that she thought I should get my daughters back, and was probably a great mother, but was not a dedicated enough patient.

Unfortunately, it’s very real, and the root cause of many  of the problems in child welfare cases.

“Some people do phrase it as a conspiracy theory,” acknowledged Richard Wexler, executive director of the National Coalition for Child Protection Reform. “When they say the government makes money on foster care, that’s not true … on foster care they still lose money, but they lose less money [than on reunification]. And private agencies do make money on foster care in many cases.”

In the United States, child welfare agencies are tasked with ensuring the health and safety of the nation’s children. Each agency receives a complex web of funding from federal, state, and local sources, leaving it accountable to a hodgepodge of authorities. Although these agencies are often referred to as “child protective services” and considered by many as a cohesive national program, state and local agencies are only linked by a loose set of federal guidelines that provide broad definitions for child maltreatment, along with the Adoption and Safe Families Act (ASFA).

First enacted in 1997 under the Clinton administration, ASFA has undergone several rewrites, but its overarching purpose has remained steady: to ensure “timely permanency planning for children.” Part of the emphasis on “permanency” includes financial reimbursements for foster care programs, as well as adoption bounties, which are lump sums in the thousands paid to states for each child they successfully adopt out after a certain threshold.

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This starts with the Federal Foster Care Program (Title IV-E of the Social Security Act), which functions as an open-ended entitlement grant. There is no upper limit to the amount of funding that can be provided for eligible foster children each year. States receive reimbursements ranging from 50 cents to approximately 76 cents for each dollar spent on daily child care and supervision, administrative costs, training, recruitment, and data collection.

But when it comes to programs that support family reunification, the budget slims. Title IV-B of the Social Security Act, which governs federal reunification funding, includes a capped entitlement component and a discretionary component. So, unlike foster care funding, these dollars come with a set limit.

And that limited money isn’t all for reunification services. Title IV-B also includes provisions that allow for some of this funding to go toward foster care programs. A portion is also required to go toward adoption promotion.

The result of this imbalanced funding structure? The federal government spends almost 10 times more on foster care and adoption than on programs geared toward reunification.

One of the less-known sources of federal funding for child welfare programs is the Temporary Assistance for Needy Families (TANF) program. TANF is supposed to be a cash-assistance program servicing low-income families with children, In reality, TANF funds can be used to support many services designed to help “needy” children, including child protection agencies. The result is that many states use TANF funds to finance foster care, child welfare investigations, and adoption or guardianship payments.

Because child welfare program data are self reported, it can be difficult to track exactly how each dollar is spent, but Wexler was able to identify eight states using TANF to pay for adoption subsidies, 23 states funding CPS investigations, 27 states funding foster care, and three states diverting TANF money to fund residential treatment facilities for child welfare involved children.

Considering that three-quarters of substantiated child maltreatment cases are related to neglect, which is often the result of poverty, it seems exceedingly unjust that funds supposedly intended to offset the worst effects of poverty are instead being used to finance the separation of mostly poor families.

Under ASFA, states are — with few exceptions — required to file for the termination of parental rights when a child has been in foster care for 15 of the past 22 months. In an attempt to curtail the infamous foster care hopscotch, which leaves children whose parents have lost their rights bouncing from foster home to foster home, the government created adoption payment incentives.

Adoption bounties range from $4,000 to $12,000 per child. As Wexler explained, “the harder the system deems the child to place, the higher the bounty.”

But in order to begin collecting that money, a state must exceed the last year’s number of adopted children, thus incentivizing states to permanently re-home an ever-increasing number of children each year. As can be expected, the number of adoptions increased in the five years after the implementation of ASFA, while reunifications declined. The Bush administration’s Adoption and Promotion Act of 2003 further codified this adoption bounty system by allocating $43 million yearly to states that succeed in increasing the number of adoptions from foster care.

Many states contract with private agencies that oversee out-of-home placements and service referrals for child welfare involved children. Said Wexler, “that agency will probably be paid for each day that child remains in foster care … So the private agency has an incentive to convince itself that the child really, really can’t go home and has to stay with them for a long, long time.”

What does this look like on the ground? Painfully delayed referrals to support services such as parenting classes and addiction treatment, judges hesitant to find fault with the way agencies and providers handle cases, and private agencies eager to deem parents unfit for reunification.

There have been some recent moves at the federal level aimed toward shifting some of these financial imbalances. The Family First Act, signed into law in 2018, now allows federal reimbursements for mental health services, evidence-based substance use treatment, and in-home parenting support. Its purpose is to create similar incentives for helping families stay together.

Unfortunately, the act does not support many of the common needs that lead to family separation, such as housing or child care support. And because the programs it does support must meet stringent requirements in order to be eligible for reimbursement, foster care and adoption subsidies continue to exceed reunification programs by the hundreds of millions.

Mandy had tried methadone, another medication similar to buprenorphine, three times unsuccessfully, but was determined to maintain sobriety this time. When she learned that she was pregnant, using again became a “hard no.” She enrolled in a comprehensive, high-risk pregnancy program geared toward people in recovery from substance use disorders.

There, she learned that due to a Massachusetts state statute requiring hospitals to report any prenatal substance use, she would be subject to a child services case once she had given birth. But she was assured that as long as she remained compliant with treatment and continued to prioritize her health and pregnancy, the investigation would be brief and relatively unintrusive.

That’s not how it went, though. Instead, she was charged with neglect and a placed on a statewide child maltreatment registry that would limit her job options and even her ability to attend field trips with her child.

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Mandy was relatively lucky because she had the knowledge and resources to successfully appeal this decision, but many mothers who face similar circumstances are stuck living with the consequences of child welfare involvement simply for seeking treatment.

Media outlets have labeled the uptick in overdose deaths since 2015 the “opioid crisis,” and a rash of sensationalized stories — cops overdosing from contact with crime scenes, babies born “addicted” to drugs, drug dealers compared with serial killers — are fueling a public perception of drug users as a macabre and dangerous population.

The result? A crackdown on parents — especially mothers — who use drugs, with a hard target centered on those with a past or present addiction to opioids. State laws vary, but at least 23 states and the District of Columbia articulate that substance use during pregnancy is child abuse, and virtually every state in the U.S. will open an investigation (at the very least) into a person who tests positive for substances during or shortly after pregnancy.

According to research compiled by the Vanderbilt Center for Child Health Policy, the number of infants entering the foster care system rose by nearly 10,000 between 2011 and 2017, and at least half of those infant removals were due to parental substance use, often during pregnancy.

Not only can these types of punitive measures make pregnant people who use substances wary about seeking medical care, but applying personhood rights to the unborn is a dangerous precedent that criminalizes people for events outside of their control; for example, earlier this year in Alabama, Marshae Jones faced criminal charges for having a miscarriage after she was shot.

Women’s rights advocates continue to fight laws that pursue the rights of fetuses before those of the people who carry them, and have seen some wins — for example, the charges against Jones were ultimately dropped, and last year the Pennsylvania Supreme Court reversed a ruling against a mother who use opioids and marijuana while pregnant, stating that fetuses were not covered in their child maltreatment laws — but it remains an uphill battle around the nation.

At the same time, abortion rights are under fire. Fueled by the Supreme Court’s conservative majority, many conservative states are implementing laws that make abortions virtually impossible to access legally and safely. For example, Alabama’s governor recently signed into law a bill that holds doctors criminally liable, with a penalty of up to 99 years in prison, for performing abortions that are not medically necessary and also bans abortions at all points of pregnancy, even in cases of rape and incest. Georgia, Louisiana, Mississippi, Missouri, and Ohio also passed recent legislation banning abortions after six to eight weeks respectively, which is before many people even realize they are pregnant. Because habitual drug use can interrupt or alter menstruation, it can be even more difficult for those experiencing addiction to catch a pregnancy early enough to terminate it in one these states.

The concurrent rise of anti-abortion laws and punitive prenatal substance-use laws leaves people who become pregnant while having a substance use disorder — whether active or in remission — trapped in a dangerous situation that is often overlooked due to the stigma attached to substance use during pregnancy.

“Among people with substance use disorders, there’s no one more stigmatized than pregnant women,” said Stephen Patrick, a neonatologist and an associate professor of pediatrics and health policy at Vanderbilt University. He added that this pervasive stigma leads some people with substance use disorders to fear and distrust the medical community, even to the point of avoiding treatment.

Unfortunately, that distrust is often warranted. “Pediatricians often don’t know what they are required to do, and often states have a hard time interpreting what the federal government wants them to do,” Patrick explained. At the federal level, child welfare guidelines are vague and general, leaving states with broad discretion when it comes to defining child maltreatment and the subsequent responses. This means that when state or county authorities are misinformed about the reality of substance use and parenthood, that bad information can easily become codified into the system. Worse, it allows those policymakers determined to give the unborn personhood rights a means for policing the behaviors of pregnant people. “The end result is a system that in many cases over intervenes in some families that may be in recovery, and in other cases may not intervene when it needs to,” Patrick said.

Mandy’s story is just one example of the real-world impact of this stigma. My own life is yet another: I gave birth in 2014 while prescribed methadone. My daughter was hospitalized for neonatal abstinence syndrome, which is a common side-effect of appropriate methadone usage. She had no other health problems and, five years later, remains a healthy and developmentally normal child.

Nonetheless, a child welfare case was opened against me in the state of Florida. At the time, the case was deemed unsubstantiated — but four years later, a call by my mother-in-law to the Florida state child abuse hotline triggered another investigation. This time, the investigator made no attempt to speak with me before making her decision. She simply looked at my previous records of having been prescribed methadone while pregnant and filed to have my two daughters removed from my care. More than a year later, I am still fighting to get them back.

I love my daughters, and I have no regrets when it comes to birthing them — but I remember learning I was pregnant with my youngest less than a year after her elder sister was born. I was on a low dose of buprenorphine after having tapered from the methadone I began taking during my previous pregnancy. I had just finished grad school, and before entering treatment had been using heroin intravenously for nearly five years. My husband and I, both in recovery, were broke and sharing a mobile home with his parents in South Florida.

I became pregnant after being unable to access a timely refill on my birth control. Abortions in Florida are not covered by Medicaid. I didn’t feel ready for another child, but I had no way to finance an abortion. I don’t know that I would have decided to get one if I could have; that’s something I will never know, because it was a choice I simply did not have. Now, the same state that gave me no other options is withholding my children from me for having sought treatment for a medical condition.

No woman should feel compelled to terminate a pregnancy because she has a substance use disorder—but when jurisdictions withhold that choice, they force people who use drugs to suffer harsh punishments simply for becoming pregnant. Sometimes, that even includes jail time.

“In 2006, the Alabama legislature passed the chemical endangerment of a child law, and even though the legislation said this has nothing to do with pregnancy and drug use — it has to do with punishing adults who take children to dangerous places like meth labs — it was used as a basis for arresting pregnant women using any controlled substance, even if prescribed,” explained Lynn Paltrow, the executive director of National Advocates for Pregnant Women. This has led to the arrest or child welfare prosecution of thousands of women since it was implemented; in 2015, ProPublica identified 1,800 affected mothers. The law is still being used.

Both anti-choice activists and those who push for criminal or civil prosecution of pregnant people who use substances claim to be protecting children. But the reality is one of oppression and harm. “It is an anti-woman policy and an anti-child policy,” says Richard Wexler, the executive director of the National Coalition for Child Welfare Reform, of child welfare policies aimed toward substance use. “Any time we take a swing at so-called ‘bad mothers,’ it falls to the children.”

You see this in cases like mine; my judge doesn’t see my daughters crying every time I leave our once weekly supervised visit, nor does she have to answer their questions about why they can’t come home, but that doesn’t mean it’s not happening. You see this also in cases like that of Keri, a mother who I interviewed for a story I wrote for Filter Mag, who bought buprenorphine on the street and self-detoxed before giving birth to avoid child welfare intervention. A 2017 paper by Amnesty International reports that doctors across the nation are seeing substance-addicted people avoid timely prenatal care out of fear of prosecution, harming the very infants these laws claim to protect.

Across the country, harm reduction efforts are gaining traction, and the government is slowly increasing access to evidence-based medical care. But even while the general perceptions and treatment of people with addictions are advancing, pregnant people who use drugs continue to be stigmatized and punished.

Said Paltrow, “There’s no question that prosecutors and others have used the stigma and horrific medical info about the impact of controlled substances on pregnancy to establish in the law separate rights for fetuses, and anti-abortion principles that treat pregnant women like criminals.”

In the United States, 7 million children are reported to abuse hotlines each year. More than 3 million of those allegations trigger a child maltreatment investigation. But that’s just the beginning of the story: Once a finding of child neglect has been made, parents have to try to correct the issue or issues that led to child protective involvement. Typically, that involves mandates for parents to undergo addiction treatment, find stable housing, secure employment, begin therapy or psychiatric care, and so on.

There’s a problem, however: Taking all those steps and proving they’ve occurred can be a byzantine process, with hard deadlines, ignorant investigators, and unsympathetic judges who work against parents. For parents who are up against the clock set by the Adoption and Safe Families Act — which requires states to file for termination of parental rights if children have been separated from their parents for 15 out of the 22 most recent months — these delays can mean the difference between reunification or the permanent severance of a family.

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If you rely upon mainstream media to clue you into the state of child rearing in the United States, you could be forgiven for believing that a typical child services case looks like a father throwing his toddler against a wall, or a mother slipping some of her prescription methadone into her infant’s bottle. But physical abuse cases comprise less than a quarter of substantiated maltreatment cases. Neglect accounts for the other three-quarters — and in child welfare terms, “neglect” is a very wide umbrella.

The most basic definition of child neglect is deprivation of something essential, such as food, appropriate clothing, housing, child care, or medical attention. Each state gets to refine the specific definitions of child neglect within that broad federal parameter, but they all generally leave the door open for child neglect to be defined as a lack of financial means, or issues that can result simply from poor parental access to mental health or addiction treatment.

My case began with an accusation of drug use. The investigator — an inexperienced member of the County Sheriff’s Office in Broward County, Florida — did not speak with me before deciding to petition for the state to shelter my kids. She looked at my records from methadone treatment nearly five years earlier and decided she did not need any more information. I found her card in my bedroom when I returned from a trip to Miami. My daughters were given to my in-laws, pending a dependency trial, which began two months later.

By then, I had submitted enough negative drug tests to shift the accusations from active drug use to whatever they could pin on me, which ultimately amounted to poverty and mental health treatment. I was still struggling to secure permanent housing, and because I didn’t qualify for Medicaid without custody of my daughters, I was not in therapy for my post-traumatic stress disorder.

It’s important to note that there is no national “child protective services” agency. Instead, each state has its own child welfare department — sometimes called CPS, sometimes something else — and each jurisdiction within the state governs its own specific proceedings. Service providers generally have to be approved by the local child welfare authority, and jurisdictions are supposed to help parents access them. But the disparity between some jurisdictions’ caseloads and the number of available services can mean long delays or inadequate referrals. And because CPS functions differently in each state and data are self-reported, there are not unified statistics on the number of parents involved in this process in the U.S.

In my case, the judge ordered a slew of services, including a psychiatric evaluation, substance abuse treatment, trauma-based therapy, parenting classes, random hair and urine drug screens, and family therapy, all to be completed maintaining stable housing, income, and paying child support. I was never offered any help with housing or employment, and by the time I received my first referral for mental health services, three months post-trial and six months since the start of the case, it was already time for my October case review. The judge deemed me noncompliant for all of my services, despite the lack of opportunity I had been given to complete them prior to the hearing. Although data does not exist on average wait times for parents involved with child services, social workers agree parents can wait up to six months for referrals and other help.

Far worse than the delays, however, was the quality of care offered to me, especially regarding addiction treatment. Prior to the child services case, I had been living in Seattle and engaged in buprenorphine-based pharmacotherapy for opioid use disorder. I had to taper off my prescribed buprenorphine because I did not know where  to access it in Florida without health insurance. When I was given a referral for an addiction treatment provider, it was to an abstinence based-program that openly espoused punitive practices. By that time, I had been separated from my daughters for six months, granted only one weekly supervised visit. Referral delays had also barred me from engaging with trauma therapy.

After the hearing where I was deemed noncompliant, a sense of hopelessness settled over me. I began to believe that administrative issues would continue to be conflated with bad parenting, and that I was fighting an unwinnable battle. Divorced from all of my supports and motivations, and in a state of deep depression, I finally relapsed, as I had been accused of doing for the past six months.

I spent the night puking over my toilet, regretting the decision to use. When I was drug tested at my evaluation, I learned that I had injected illegal fentanyl, a super-potent opioid that has been popping up in heroin supplies across the country and driving a spike in overdose deaths. But my evaluator was not sympathetic. She demanded that I attend detox, even though a one-time use does not produce a physical dependency that would necessitate a detox, and did not offer me the pharmacotherapy that would have best prevented continued use.

When I asked my case worker for another referral to an evidence-based provider, I was ignored. In late April 2019, more than a year after my case was opened, my attorney notified me about a medication-assisted treatment program that would be financially covered. I enrolled immediately, and recently won a court battle to have it accepted — so long as the buprenorphine was only administered on a temporary basis. (Studies, meanwhile, have shown that buprenorphine is most effective in patients who take it for two years or longer.)

My clock is up in late August. At the beginning of last year, my life was a mess of sleepless nights, playdates, toilet training, and seemingly endless house chores. There never seemed to be enough time in the day. Stress was my baseline.

Now, my life is a series of endless, empty hours broken only by the routine of my court-mandated services. Instead of fixing breakfast and coaching my girls through brushing their teeth and dressing for school, I drink coffee alone before biking through the heat of Florida to three and a half hours of intensive outpatient therapy, five days a week. I am not greeted in the afternoon by my daughters, but with texts from a faceless social worker directing me to take random drug tests. My days are shaped by paperwork, mandates, and a persistent sense of longing. I am haunted by a constant hunger for the chaos of motherhood. I miss stepping on Lego bricks, and bedtime kisses. I miss cajoling broccoli into stubborn mouths, and big shrieking hugs as my girls tumble off the bus from school. Every time I see my daughters now, something has changed: a favorite color, a hair style, a shoe size. I am missing everything, and I have no idea when or if my real life will begin again.

The conditions that led to the riot were nothing new. MCCC was designed to hold 301 people, but at the time was packed with over 400. The jail has a history of chronic overcrowding; in 2016 the American Civil Liberties Union of Hawaii filed a complaint that named MCCC as the most “egregiously overcrowded” on the islands, to the point that it was unsafe. Among other issues, the report notes that it was common for three, four, or sometimes five people to be placed into cells designed for two, forcing them to sleep on the floor among roaches and rats, sometimes with their heads beneath the toilet.

Tempers were strained by other issues, as well. Anonymous whistleblowers told The Maui News about undersized, nutritionally insufficient meals, and last year, the facility was fined more than $16,000 for failing to maintain a functioning fire alarm system. The phones — which often serve as the sole connection to incarcerated people’s children, partners, and other family — were chronically broken. “And mail,” Sam said, “we’d get [letters] that were weeks and weeks and weeks postdated, or never, ever get them; they’d just get sent back.”

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On March 11, 2019, some of the people detained at MCCC began complaining to the guards. It started as a typical, minor confrontation, but this time they’d had enough of being ignored. When a guard ordered everybody back to their cells, several detainees refused. And then they did more than refuse. They began by throwing chairs at windows, smashing computers, and stacking together toilet paper rolls and other flammable items. Overbooked and understaffed, the situation quickly became more than the guards could control. Soon, there was a fire. Detainees report being locked in cells while the module burned, their guards nowhere to be seen. Fire sprinklers worked only sporadically. Smoke filled the cells, blindingly thick. Sam said he was able to escape to an outdoor recreational area, but when he and several others arrived, police negotiators yelled at them to go back inside and leave through the emergency exit, or face escape charges. But according to Sam, those emergency exit doors were jammed.

Eventually the fire was doused, but detainees then had to contend with police in riot gear, who were beating people, sometimes after zip-tying them, according to the reports given to The Maui News. Once the riot was settled, people jailed in the facility were sent back to the same cells that had just been trashed. Many had no access to working toilets. Sam’s mattress was gone. Eventually he passed out on the concrete floor, succumbing to sheer exhaustion.

In the month after the riot, two inmates escaped from the facility through a broken door. MCCC has not stopped housing people, not even for repairs, which include fixes for smoke-stained walls and replacement beds, chairs, tables, and kitchen equipment. One module had to be decommissioned due to the damage; the people housed inside were relocated to other areas of the facility, which are now even more crowded than they were prior to the riot.

When asked for comment, a prison official told TalkPoverty “The disturbance at the Maui Community Correctional Center (MCCC) is under investigation and internal review by the Department of Public Safety. There is nothing further we will be discussing about the on-going investigation at this time.”

The damages are expected to cost 5.3 million dollars, much more than it would have cost to fix the phones or provide sufficient meals to the people housed in the facility. National estimates place the cost of feeding incarcerated people at around $2.62 per person per day; raising that figure by a full dollar would not bring MCCC’s food budget, at capacity, to even half a million dollars. And phone calls, which cost money to detainees and their families, are a highly profitable industry in the corrections world, which means those phones essentially pay for their own repairs. What happened at MCCC is an extreme, dramatic example of the deleterious effects of overcrowding within correctional facilities, but the core issue is one that quietly affects pretrial jails and prison facilities across the nation.

Last April, guards were so overwhelmed by a riot in a South Carolina maximum-security prison that they waited more than four hours to enter the building, leading to the deaths of seven inmates. A 2017 riot in Delaware that led to the death of a corrections officer has also been attributed to overcrowding and understaffing. And earlier this year, the U.S. Department of Justice deemed Alabama state prisons for men were in violation of the Constitution due to severe overcrowding that led to physically and emotionally dangerous conditions. Some evidence suggests overcrowding may even be linked to a rise in the use of solitary confinement.

Overcrowding can manifest in everyday deprivations, like the denial of visitation, vocational and rehabilitation programs, and appropriate medical care. And it stems from laws and policies that target vulnerable populations. There are laws targeting transient and low-income people, such as panhandling, loitering, and public camping ordinances. Then there are those which could theoretically affect anyone, but somehow tend to target the poor anyway. Drug laws, for example, disproportionately affect people like Sam; addicted, cash strapped and in need of medical treatment. Sometimes people can be incarcerated for months simply for carrying a used syringe or a baggie with stray powder.

Those laws are paired with the cash bail system allows wealthier people to pay their way out of jail pending trial, and leaves those with less economic means — about 460,000 people, or one-quarter of all incarcerated people —  behind bars. People who face pretrial detention are more likely to be convicted, usually through a guilty plea.

When people are picked up on allegations that are essentially the result of deprivation — whether of food, housing, or appropriate medical care — and can’t make bail, they languish in correctional facilities until those facilities become stretched beyond capacity. Because these laws essentially target people for activities of necessity — for example, sitting on a sidewalk — they lead to overzealous arrests of people who don’t have the money to bond out. Too often, the crimes that land people in jail stem from an acute need for mental health or substance use services —the exact type of care that these facilities are unable to adequately provide.

What took place in Maui is only one example of a nationwide issue. Across the country, cash bail practices along with anti-drug user and anti-loitering laws continue to funnel people through an already overloaded system, increasing the cost demand on facilities to provide for the basic needs of the people housed inside. The result is hundreds of thousands of people crammed into jails and prisons that are unsafe, unhealthy, and, quite possibly, unconstitutional.

Editor’s note: When requested, names have been changed to allow people to talk more freely about their experiences behind bars.

But after decades of collecting this data, the government is putting it to use. This information is feeding algorithms that decide everything from whether or not you get health insurance to how much time you spend in jail. Increasingly, it is helping determine whether or not parents get to keep their kids.

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When someone phones in a report of suspected child abuse — usually to a state or county child abuse hotline — a call screener has to determine whether the accusation merits an actual investigation. Sometimes they have background information, such as prior child welfare reports, to assist in their decision-making process, but often they have to make snap determinations with very little guidance besides the details of the immediate report. There are more than 7 million maltreatment reports each year, and caseworkers get overwhelmed and burn out quickly — especially when a serious case gets overlooked. New algorithms popping up around the country review data points available for each case and suggest whether or not an investigation should be opened, in an attempt to offset some of the individual responsibility placed on case workers.

The trouble is, algorithms aren’t designed to find new information that humans miss — they’re designed to use the data that humans have previously input as efficiently as possible.

“If you give it biased data, it will be biased,” explained Cathy O’Neil, mathematician and author of the book Weapons of Math Destruction, while speaking with me for a story I wrote for Undark last year. “The very short version is that when you’re using the past as a kind of reference for how it works well, you’re implicitly assuming the past is doing a good job of rewarding good things and punishing bad things. You’re training the system to say if it worked in the past, it should work in the future.”

Historically, low-income families have had their children removed from their homes at higher rates than wealthier families. As a result, these new algorithms work to codify poverty as a criteria for child maltreatment. Some of the variables that these tools consider are public records that only exist for low-income parents, such as parents’ poverty status, whether they receive welfare benefits like SNAP and TANF, employment status, and whether they receive Medicaid. Other factors, like previous criminal justice involvement and whether or not there have been allegations of substance misuse in the past, are also dramatically more likely for families living in poverty.

This bias exists even in systems that have been highly praised, like the Allegheny Family Screening Tool currently being implemented in Pittsburgh, where prior arrests and parents’ mental health histories are considered factors in whether a child should be removed. It’s similar in other, less-transparent systems, like one in Florida where tech giant SAS contracted with the Florida Department of Children and Families to research which factors were most likely to contribute to the death of a child by maltreatment. According to press releases by SAS (some of which have been unpublished since they began garnering media attention) the company used public records such as Medicaid status, criminal justice history, and substance-use treatment history.

The results led jurisdictions in Florida to zoom in on factors that apply to huge swaths of families, including mine. In April of last year, an allegation of drug use and child abandonment led Broward County, Florida child welfare investigators to investigate my family. When my drug tests were negative, the investigation pivoted to my recent financial setbacks, which had been caused by my husband’s acute health crisis. My children were ultimately removed from my care, and we have been separated for nine months for reasons that are primarily financial. My case is far from unique. Three-quarters of child protective cases in the United States are related to neglect, not abuse, and that neglect usually means lack of food, clothing, shelter, heating, or supervision: problems which are almost always the result of poverty.

Ira Schwartz, a private analytics consultant, thinks he may have found a way to help re-balance this system. He conducted a research study in Broward County — the same county in which my case is based — that discovered the current approach to child welfare substantiation is highly flawed. According to his research, 90 percent of system referrals were essentially useless, and 40 percent of court-involved cases (which typically involve child removal) were overzealous and harmful, rather than beneficial, to the families. He created his own system that, like the Allegheny tool, predicted the likelihood that a family would become re-involved with the system. But he admits quite openly that predictive algorithms like his target the poor.

“We found in our study that lower socioeconomic status was one of the significant variables that was a predictor [for reinvolvement with the system],” said Schwartz. “The issue with higher-income families is … they just don’t really come into the system because they have other options. With higher-income families, when there’s child abuse or neglect or even spouse abuse and it’s reported, they can afford to go to private agencies, get private mental health services; they can see a psychiatrist or social worker or psychologist … it’s a discrimination factor.”

Schwartz believes that these types of admittedly discriminatory computer programs can still be put to good use when combined with prescriptive analytics, which would determine the services that high-risk families need in order to remain out of the system in the future. Schwartz says this would include services like rental assistance, food assistance, day care funding, and housekeeping services. This would help welfare agencies understand which families need what services, and streamline the process of providing them. (All jurisdictions are legally required to make “reasonable efforts” to help families resolve the issues that brought them under investigation, but how agencies go about meeting that standard varies widely by location.)

The issue with these algorithms is certainly not malice on the part of their creators. Even the more secretive, proprietary algorithms being created by companies like SAS claim to want to create a safer system that results in less child maltreatment. But it’s unclear if that is possible with the data that’s available. Without comparable data from wealthier populations, which are better protected by privacy laws, the new systems cannot produce accurate results — and even if more data were added, it would mean more families are being separated and surveilled.

“She was a single mom with a six-year-old son,” Rushka says, adding, “she was just coming out of an abusive relationship.” So Rushka decided to see if she could organize some of the folks who had offered to help her into helping this woman instead. She ended up with a minivan full of donations — some used, some new — of everything from clothes for mom to toys for her son. Rushka describes the people who met her as coming from a range of social classes, but notes that many were middle class or lower middle class. A lot of them, she says, commented that they were helping because they too had struggled. “The woman was crying when I met her,” Rushka recalls. “I told her honestly, I’m an addict in recovery and a lot of people have helped me out.”

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This kind of story doesn’t end up in the news as often as descriptions of dramatic convenience store robberies or violence-plagued low-income neighborhoods — but it’s a known, common thread within these communities. Poor people hold one another up. For decades, if not forever, poor communities have not been able to count on the government for support. SNAP (formerly known as “food stamps”) only provides about $1.40 per person per meal, and in the poorest states in the country, less than 4 percent of poor families receive TANF (Temporary Assistance for Needy Families, often referred to as “welfare”). Perhaps this lack of sufficient government assistance is why a 2010 study by researchers at University of California, Berkeley and University of Toronto discovered that lower-income people are more inclined toward thinking on a community level than people from other classes.

In the study, participants were told to gather as many points as possible. They were given an initial number of points and the option to keep the points for themselves or to give a portion of their points to an unseen partner. Anything they gave to their partner would be tripled, and then their partner would have the option to share a portion of their new, higher total of points with the study participant. Of course, there was no actual partner; the experiment was a measure of prosocial trust. Would participants trust their partner enough to share a sizable portion of their own points so they could both leave with a bigger total payout, or would they keep their points to themselves?

The results showed lower-class participants gave up more of their points in hopes that their partners would share a larger amount of their total, supporting an overall hypothesis that the increased generosity seen in low-income people results from intra-communal reliance. The lower-income participants needed a larger payout than they could get on their own, so they had to trust their partner to support them. As a result, need spurred generosity.

The tendency of low-income people to help others in need is something you can observe in the real world all the time, if you know where to look. You see it in the form of family hand-me-downs, diapers donated to a neighbor in need, or rideshares to the grocery store. Right now in Boston, the National Council for Incarcerated and Formerly Incarcerated Women and Girls is working to formalize this phenomenon by creating supportive microcommunities within vulnerable neighborhoods. “Our organizing motto is ‘block by block,'” says Executive Director Andrea James. She describes a system in which women reach out to neighbors to find out what they need in order to thrive, whether that’s a food pantry, a bail fund, a community garden, or a ride to the polls. It is a grassroots pushback against the government failure to provide, or at least provide enough, for its most vulnerable citizens. Led by women with criminal backgrounds — the exact kind of people often labeled “underprivileged” — this grassroots welfare project exemplifies that same generosity and trust observed by the researchers at Berkeley in 2010, and by Rushka last Christmas.

These community-focused habits are spreading outside of low-income communities, with mixed results. One of the better-known examples, The Buy Nothing Group, was specifically modeled after a poor community that the founders witnessed while working a relief mission in Nepal. In theory, the tenets of the Buy Nothing Project are simple: nothing is sold or traded. Each item is given freely, with no expectation of reward. Participation spans class, and at times, can work beautifully. I personally owe a lot to my local Buy Nothing Group: Members helped furnish my home, helped me with diapers for my daughters, and even provided food grown in backyard gardens.

It was a beautiful experience — but it was different from the giving and receiving that takes place within the confines of low-income communities. When people gave or received items in my Buy Nothing community, it was not often driven by need. Items are supposed to go to whomever the giver wishes, using whatever criteria she decides. Some people went so far as to state that they would not give to anyone who openly expressed needing something; they found that discussing need was distasteful.

That’s where the appropriation of low-income community tools became problematic.

Some people do need more than others. Pretending otherwise introduces an element of shame that doesn’t exist within low-income giving circles, in which everyone understands what they are providing and why. What’s worse, it introduces the idea that need is a weakness, rather than a normal and reciprocal part of human existence. The expectation that people can take when they need and give when they have plenty is essential to how societies work. If it’s been a long time since you needed something, it’s easy to forget that. But that’s not a luxury that most low-income people have.

Generosity is a beautiful human trait. It’s also a survival tactic. If economically stable communities are going to start implementing the survival tactics of the poor for other reasons — whether it’s to pass the time, meet their neighbors, or just get rid of stuff — they need to recognize that there are still people who rely on community resourcing. And they need to acknowledge that these neighborhood-sharing programs have their roots in low-income communities, whose members have been helping each other stay afloat long before it was trendy.

When most people hear “the state took my kids,” their minds jump to the worst conclusions. These cases are quiet and the courtrooms are closed, so I don’t blame you for assuming I was beating them up, or looking the other way while they were abused, or some other such nightmare scenario you see on the Lifetime channel. Those kinds of cases happen, but far more common are the ones where parents do their very best but still come up short on money for the heat, or the rent, or a licensed babysitter. My case is one of those, in which a little more cash and sympathy would have kept my daughters with me.

Three-quarters of substantiated child maltreatment cases are related to neglect, and the kind of neglect that triggers a CPS case is almost always the result of poverty. Although each state gets to set its own specific definitions for neglect, they typically center around deprivation of things like food, shelter, clothing, or medical treatment, which are problems almost totally exclusive to poor people.

The accusation that brought child services into my family was related to drug use. My mother-in-law, with whom I’ve never really gotten along, called the child abuse hotline and told them she suspected I was out using heroin while she watched the kids.  After a series of urine and hair panels tested negative, child protective services broadened their investigation. They raised concerns about the fact that I was living with my in-laws, and that I had been unable to attend trauma therapy for a month while I waited for my new state insurance to go into effect.

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The investigation lead to a dependency trial, where the investigator made it clear that my daughters showed no signs of abuse or neglect. I lost anyway. There are no juries involved in child welfare cases, and the burden of proof is lighter than in criminal cases: It only requires a “preponderance of the evidence,” which means the judge’s ruling depends on their personal opinion. In this case, the judge didn’t think I was a credible witness, so she ruled against me.

This means that my daughters now live with my in-laws, and I am legally barred from being in their home after 8 p.m. I get two supervised visits per week while I navigate a web of random drug tests, mental health evaluations, parenting classes, and trauma-based therapy — the details of which get reported back to my case worker, the state attorney, my daughters’ guardian ad litem, and the trial judge — in an effort to win back custody.

If I had been in a different city, or a different state, things might have turned out a lot differently. Child protective services is an umbrella term used to describe individual local agencies. They are governed by standards set at the federal level but operate independently in each state, and city-level jurisdictions set their own policies to manage reports of neglect or abuse. This means that location plays an enormous role in CPS response. Families who live in an area experiencing an economic boom are more likely to receive support, like help turning the water back on if it was shut off for nonpayment, while families in more depressed areas are less likely to have resources available to them. Because of the subjectivity of these cases, it’s likely the politics of the judges and caseworkers play a large role as well.

I’ve experienced this difference first hand. This time last year, I was living in Seattle. When I overdosed during a brief relapse in 2016, the King County child protective agency inquired about my family’s financial difficulties. After learning that the relapse had been prompted by legal difficulties with my abuser — for which I could not afford representation — they referred me to an agency that was ultimately able to provide me with an attorney pro bono. When I disclosed that I was having difficulty accessing trauma therapy because I could not afford child care, they helped secure placement for both of my daughters in a free, comprehensive daycare. And when I told them our utilities were pending shut-off, CPS paid the portion required to keep them running. My daughters did not spend a single day out of our home, and our lives began to improve.

But Seattle is a very wealthy area, with a high cost of living. When my husband had a mental health crisis that prevented him from working, we had to move somewhere more affordable and closer to his family. That somewhere ended up being Broward County, Florida. The economic differences are stark: Seattle’s median household income is almost 50 percent higher than Broward’s, and its minimum wage is nearly twice as high. Although it can be hard to catch your breath in Seattle if you’re poor, there are more avenues for help available than in Broward, and the CPS response between the two areas reflects that. In Seattle, we were given a chance to recover. In Broward, it was assumed we wouldn’t be able to.

Josh Michtom, a Connecticut public defender who represents child-welfare involved parents and children, says that poor families have the most difficulty when they come under CPS scrutiny. “Starting from the beginning…poor people as a general rule live a little closer to the edge. Scrambling to and from daycare, hurrying from job to job or job to home, living in more precarious housing or housing that isn’t as well kept-up…it’s not to say all poor people are neglectful or abusive, but run the simulation a hundred times and it’s going to come out with more things that raise an eyebrow for a teacher or daycare worker or hospital worker [who are mandated to report suspected abuse or neglect to CPS].”

According to Megan Martin, vice president of public policy at the Center for the Study of Social Policy, the “vast majority” of child welfare cases are poverty related. Martin also points out that the numbers may not even fully capture the extent of the relationship between poverty and child welfare involvement. She says that the official figure, which links 47 percent of cases to poverty, measures families who are financially unable to meet their basic needs. (For example, a parent who does not have the means to heat their home in the winter.) But that doesn’t include other issues related to poverty. She uses the example of inadequate supervision, a common factor in child removals that has gained some past media attention.

“If you can’t afford child care and don’t have other resources like family to watch your kids, you might end up with a nine year old watching a two year old,” says Martin. “When kids are removed for inadequate supervision, that’s not necessarily included in that 47 percent.”

In his practice, Michtom also struggles with the huge cultural divide that often exists between mandatory reporters and many parents living in poverty. He describes how something such as a parent deviating from the typical upper- or middle-class vernacular may lead a teacher or pediatrician to subconsciously distrust the parent and therefore ascribe malicious intent to something like a bruised knee or unkempt clothing.

Even using that vernacular can count against parents who don’t look the part. At the end of my trial, the judge cited my “skill with language” as her reason for disbelieving my testimony, adding that I could “sell ice to an Eskimo.” My advanced education and ability to communicate clearly should have benefited my case, but coupled with my poverty and substance use disorder diagnosis, it led her to read me as a con artist instead.

“Middle- and upper-middle-class people have a language and way of talking to professionals that seems ‘good and responsible,’” Michtom observes. “When a kid has a completely not abuse related injury and the school nurse calls the parent and says ‘can you explain this?’ and the parent maybe doesn’t speak English as well or just seems less trustworthy to this middle-class nurse in a way maybe the nurse can’t quantify, then the nurse says ‘I have a duty to report this.’”

Once an investigation is opened, the family’s life is picked apart. Even if the original allegation turns out to be unfounded, a myriad of other factors — issues that may not have been enough to prompt a call on their own — can be used against the parent. In my case, the state obsessed over the fact that I didn’t have my own housing, despite the fact that more than one-third of adults were living with their parents in 2015.

Michtom believes that cultural differences between investigators, judges, and other people involved in the substantiation process directly affect how even small deviations are perceived. “If you don’t know what it’s like to be poor and you don’t know what it’s like to make the compromises poor people have to make,” explains Michtom, “the wrong social worker calls them deplorable or filthy even if it was just messy or cluttered, and that increases the likelihood that it leads to a court petition [for the child’s removal].”

As he says this, I remember the shame and anxiety I felt doing something as simple as going to the playground, where my daughter’s coats, though surely warm enough, looked dingy and stained next to the kids running around in clothes so absurdly bright they looked like something out of a cartoon. My anxiety wasn’t just based on embarrassment; it was also couched in the visceral fear that people would assume I was a bad mom because of something as simple as clothing my daughters in used coats.

Parenting in poverty creates a cycle of factors that compound each other. For my family, an inability to pay for child care or legal aid in 2016 created a snowball of stressors that ultimately led to a relapse and almost killed me. This year, when we were managing to get by, a sudden unexpected health emergency sent us spiraling right back into the system.

As I continue to fight for the return of my daughters, I can’t help but wonder what it would look like to have a uniform child welfare system that recognizes these types of complexities. Maybe my daughters would be with me now. Maybe my husband would be on a road to wellness instead of struggling alongside me to find permanent housing. Maybe the other 3 million families involved with CPS would flourish and thrive. Maybe parenting in poverty would stop being so hard.

“I missed out on so much,” she mourns. “Just being tired, not able to enjoy life.”

Gray acquired hepatitis C in 1991, and spent more than twenty years living with the virus’s effects. Though she didn’t begin to experience symptoms of major liver damage until 2015, she says she spent most of her life feeling fatigued, sometimes to the point of being bedridden, and nauseated.

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Interferon treatment, the first available treatment for chronic hepatitis C, was introduced in 1996, but the cure rate was low; around 30 percent for genotype 1, the most common form of the virus in North America. It was also difficult to administer, requiring self-injection into the stomach, and came with a host of side-effects, ranging from nausea and muscle aches to long-term autoimmune dysfunction. The full treatment course lasted six months to a year. Gray tried interferon treatment for a month, but discontinued it when she learned she was pregnant.

“I’m glad I did,” says Gray. “I’ve heard horror stories about people who took it for the year.”

Gray is not the only hepatitis C patient who chose decades living with the virus over attempting interferon. David Cowley of Wales lived with hepatitis C for 35 years, refusing interferon because of its side effects and low success rate. But Gray and Cowley share something else in common: neither has hepatitis C anymore.

One day in 2015, Gray’s boss noticed that she looked, she recalls, “as yellow as the walls.” Because jaundice (yellowing of the skin and eyes) in patients with hepatitis C is a sign of serious illness, she immediately went to her doctor and learned that she had liver cirrhosis. She applied for disability benefits, and while waiting for a determination, began undergoing the testing procedures that would allow her to take a new kind of medicine, one with a much higher success rate and far fewer side effects.

Sofosbuvir is a direct acting antiviral (DAA) medication sold by American biopharmaceutical powerhouse Gilead Sciences under the brand names Harvoni, Sovaldi, and Epclusa (Harvoni and Epclusa also contain other drugs, making them single-pill regimens, while Sovaldi requires a second drug to be prescribed with it). These drugs have a 90 percent or higher cure rate across a variety of genotypes (for genotype 1, the cure rate closes on 100 percent), and Harvoni in particular boasts only mild, short-term side effects like fatigue. All three medications are consumed orally and take 12 weeks to complete. In comparison to the old treatments, these DAAs function like a miracle. Gilead initially set the price for full treatment between $74,000 and $94,000 for patients in the United States.

Medicaid covers the treatment — but there’s a catch. There are 3.5 million people in the United States living with hepatitis C, and state Medicaid programs find it difficult to afford to treat patients at the prices Gilead set. (Rough math says curing all current cases would cost Medicaid half of its annual budget). Most state Medicaid programs initially dealt with the shortfall by limiting treatment to people who meet their criteria. In 25 states that criteria includes abstinence from illegal substances, even though most new hepatitis C infections in the United States are the result of injection drug use.

In 32 states, patients must also have liver damage. Newly-infected patients, or those whose disease hasn’t progressed far enough, must wait until they suffer potentially irreversible liver damage before they receive coverage for their treatment. In addition to more time living with the symptoms, this also increases the risk of complications like liver cancer and decreases the effectiveness of treatment. In one study of economically disadvantaged patients, only 82 percent of patients with decompensated cirrhosis (a severe form of liver damage) achieved viral elimination.

Medication access is not only an issue for chronic hepatitis patients in the United States. Other countries have been battling high drug costs as well, including Australia and the United Kingdom. David Cowley was fortunate — and tenacious — enough to get into a 2013 drug trial for Harvoni in the UK. When he learned about the trial, which required a weekly trip to an office that was 200 miles from his home, he called and “pestered them for weeks” until he got in. Within months of beginning treatment, he was cleared of the virus that had been slowly killing him for 35 years. Then the drug that saved his life hit the market, and he learned the price tag.

“I was disgusted by the prices,” he says. So he decided to travel to Bangladesh to get hold of generic versions of the medication for distribution to other patients in need. Cowley was not the only person with that idea.

James Freeman, a doctor who runs a telehealth program in Australia, and Greg Jeffreys, a historian and author also based out of Australia, run what each hesitantly call “buyers’ clubs” for hepatitis C medications. Cowley, Freeman, and Jeffreys all know each other, though they operate separately. The clubs function under the same essential premise: That hepatitis C medication should be available at free or low cost to everyone who needs it. They help patients acquire the generic drugs, offering full 12-course treatments for around $500-$1000, and sometimes less based on need and availability.

“It’s pretty simple,” says Jeffreys of his service. “Someone contacts me, I ask for some kind of medical report to show they actually have hep C, I explain what it costs, they send me a copy of their report, their shipping address, their contact phone number, a payment method — whatever that might be — and two weeks later they have their medicine.”

These buyers’ clubs operate by taking advantage of personal importation laws, which vary by country. For the U.S. that means buyers must import less than a three-month supply, and they cannot sell or distribute the medication. An added provision that a medication must be unavailable domestically leaves the legality of these practices in somewhat of a gray area .

Rochelle C. Dreyfuss, co-director of the Engelberg Center on Innovation Law & Policy at New York University, says that under patent law, buying and importing a cheaper version of the same product from another country is legal, but the addition of U.S. Food and Drug Administration (FDA) regulations make pharmaceuticals especially tricky. “I think [this] confusion is everyone’s confusion,” she notes, adding that if the FDA were to crack down, “one side will say it’s available domestically, you just have to pay more money, and the other that these patients can’t afford to buy it here.”

Although the FDA is not currently intervening in these buyers clubs, some doctors are wary and advise against importing generic drugs. After all, how can a buyer know what’s truly in them; whether they are effective or potentially dangerous?

This is a sentiment Lisa Gray understands. Jaundiced and living with disabling liver cirrhosis, Gray was eagerly awaiting her medication approval — now that she was finally sick enough to meet the criteria. But when she began receiving $1,500 monthly in disability checks after her liver damage left her unable to work, she lost the Medicaid coverage that would have paid for her treatment. (Louisiana expanded Medicaid the following year, but 17 states still have not done so). Uninsured, and unable to pay the premium and co-pay for private insurance, she began looking into alternative options.

“At first I was very skeptical,” she says of the buyers clubs. “It even went through my mind that they’ve got all these people paid to praise generics…but I found Greg Jeffreys, I talked to him, and I realized it’s not a scam.”

Gray says Jeffreys worked with her financial situation by getting his medication connection, which is based out of India, to send her a recently expired 8-week course of sofosbusvir free of cost. That left her responsible only for the other drug she needed to take with it, daclatasvir. She paid $350 for it, by credit card. When she was unable to come up with the funds for her remaining treatment, Jeffreys sent it to her free of charge.

“It was scary because you don’t know if it’s a real medication or not, but I thought what do I have to lose? I was throwing up everyday, it was horrible,” recalls Gray. “I started taking that medicine; my eyes were yellow, they got white. It was amazing.”

Gray also remembers her doctor insisting that she wait until she could find funding for the prescribed treatment course, rather than using a personal import scheme to buy generics. “My doctor literally screamed at me. [She said] ‘they’re not regulated, they could be fake.’”

But Jeffreys, Freeman, and Cowley, who now all use a shared seller out of India, insist that fear is unnecessary — at least when it comes to their medicines. Freeman reports that he has seen a 94 percent cure rate with his own patients. With the benefit of his medical background and connections with the Tasmanian government, Freeman says he’s had his drugs tested from the start, when he was importing raw materials from China, and that they are virtually identical to those found in Harvoni and other brand name medicines. Jeffreys added that the Indian connection the three use now gets the drugs directly from Mylan, who partners with Gilead Sciences to manufacture these drugs in India.

“These products are licensed by Gilead and approved by the FDA,” Jeffreys asserts. “To say they’re dangerous is crazy.”

This doesn’t mean that all buyers’ clubs are created equally. As with any unregulated enterprise, copycats have popped up on Facebook claiming to have special contracts for drugs with other countries. Although there’s no way to know for sure whether these are illegitimate, they — unlike Jeffreys, Cowley, and Freeman — did not immediately respond to inquiries for comment.

States have been slowly lifting regulations surrounding Medicaid access to direct acting antivirals for hepatitis C. As of 2017, 18 states have lifted the liver fibrosis restrictions and 22 others are granting coverage to patients with less severe liver damage; four of these require only mild fibrosis. In addition, the Department of Health and Human Services has questioned Gilead and other companies about their pricing in the hopes of being able to grant coverage for more patients. The hope is that as more drugs become available and drug costs lower, more states will lift or lessen eligibility restrictions so that patients in the United States can access these medicines through their providers.

Still, Jeffreys says he has seen no decline in Medicaid patients from the United States who need meds. “I get heaps of them,” he says about clients on Medicaid. “It’s been exactly the same for the past three years. I get probably 100 e-mails from the United States every week.”

For low-income patients like Gray, who lose or are denied coverage, these buyers clubs have become a lifeline, linking them to treatments that change their lives within months.

“It’s just an amazing feeling to know that this virus is not alive in me anymore,” says Gray, who had no detectable viral load twelve weeks after treatment. “I just get mad that my own country could not help me.”

Shortly after the investigator entered the home, Truitt says the investigator called to demand she leave work immediately to meet at the department’s local office. While there, Truitt, who takes methadone as part of her addiction recovery treatment, admitted to using marijuana daily for anxiety, and cocaine once in the week prior, but denied using illegal drugs in the presence of her child. After that admission, Truitt says, things went downhill fast.

“I saw she wrote I smoke around my son,” Truitt says of the safety plan her caseworker hand-wrote in pencil during their meeting. “I don’t smoke around my son…[My caseworker] said, ‘it’s the end of the day, we’re not changing it.’” (Due to confidentiality laws, the Delaware Division of Family Services declined to comment.)

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Safety plans like these are widely used in the realm of child protective services investigations in an attempt to resolve perceived threats to a child’s health and safety without judicial involvement. Though informal, they are signed by both parties and are considered binding within the realm of the department. According to the U.S. Department of Health and Human Services, a positive drug test (or other confirmation of a single act of drug use) is not enough to substantiate child maltreatment accusations, or to determine child placement. But because safety plans are not legal documents, local departments have discretion of how they apply those standards, so long as the parent agrees and signs the plan. It’s up to the department what happens if a family violates an agreement, but the possibility includes showing up with a police officer and a court order to remove the child.

Truitt says she signed the safety plan because she was told the alternative was foster care. What she didn’t know was that the department would have needed to present the case to a judge before placing her son in foster care. Agreeing to a safety plan is not compulsory, nor are these plans technically binding in a legal sense. But parents, who are often pressured to appear compliant, don’t always know this. If they can’t hire an attorney on their own, it’s unlikely anyone will tell them that they don’t have to agree.

For Truitt and her family, this safety plan had devastating effects. As part of the plan, Truitt was asked to place her son in the care of a family member. She says she initially believed it was just for the weekend, but Truitt’s son ended up living with her sister for 30 days.

Because child services agencies are regulated at the state and county levels, we have no way to gauge exactly how many families are separated through these methods: The only data is voluntary and self-reported. In one class-action lawsuit related to safety plan removals, a case that began in the 1990s and covered only the state of Illinois, there were more than 150,000 plaintiffs. Child removals have only risen since that time.

In 2016, child services agencies across the United States received maltreatment complaints for more than seven million children, with close to four million of those children deemed as meeting the initial criteria for abuse, abandonment, or neglect. At least one-fifth were removed from their parents’ care. Rachel Paletta, senior associate at the Center for the Study of Social Policy, says that “the majority of child protective services referrals are for child neglect, so that may be inadequate housing or lack of clothing and food, and all of these things can be related to poverty…[however,] circumstances that are solely a result of poverty and not ill intent on the part of the parents should not be considered neglect or abuse.” Although it’s difficult to place an exact figure on the amount of low-income families that have child welfare involvement, there does appear to be a correlation between child removals and families who require financial assistance.

Safety plans have become the subject of legal scrutiny in recent years, but thus far, attempts to curtail their use have failed. Opponents of safety plans cite their coercive nature—it’s hard to say that a parent is truly volunteering to the terms when the other option presented is long-term separation from their children. Of course, although case workers are advised (and in some states, mandated) to inform parents like Truitt about the possibility that their children will be removed for a longer time by a judge, it’s impossible for these workers to accurately predict the outcome of a hypothetical hearing—especially since the parent could have access to legal counsel and Child Services would be forced to present evidence of maltreatment.

Although their separation was relatively short, Truitt says her family is still suffering the effects. Her son, who will be three in August, constantly screams to be held, which she says is a new behavior. He cries whenever they visit her sister, and he has developed an intense phobia of bugs. Truitt thinks this is because they told him he was staying with his aunt due to an infestation in the home. She is now “constantly paranoid” that child services will try to remove her son without warning again, even though she is actively engaged in addiction and mental health treatment.

Maia Szalavitz, a neuroscience journalist and co-author of The Boy Who Was Raised as a Dog: What Traumatized Children Can Teach Us About Loss, Love and Healing, says that even short-term parental separation can have devastating lifelong consequences for children.

“Every single time a child makes a custody transition it’s an adverse childhood experience so it’s potentially traumatic. The more of these experiences you have, the greater the risk for addiction, mental illness, and physical problems like obesity,” says Szalavitz. She also notes that this goes both ways; once a child adjusts to a new custodial environment and begins bonding with his new caregivers, returning home counts as a stressor. That means that every time a child is placed into temporary out-of-home custody, he is guaranteed at least two adverse experiences. For children bouncing between homes in the foster care system, the number of adverse childhood experiences caused by child services involvement is even higher. One study found that four or more adverse childhood experiences indicated a significantly increased likelihood of physical and mental health problems later in life.

For now, Truitt is happy to be reunited with her son. In the thick of the Delaware summer, she enjoys splashing with him in the kiddie pool she has set up in her backyard. But she remains haunted by the possibility that a social worker could come by once again and, with nothing but a pencil, uproot her family like they did last April.

Across the United States, people are mandated to take drug tests for a variety of reasons, ranging from employment, to drug treatment, to probation. While employers and insurance companies typically cover these fees, court-ordered tests are often at the expense of the individual. The costs vary widely, and can result in hundreds of dollars of fees depending on type and location. For urine and saliva tests, costs run $25 to $80—though one facility in West Palm Beach, Florida is reported to charge as much as $2,300 for a urinalysis. Hair tests range from about $100 to $150 each. Regular breathalyzer tests are usually only a few dollars, but ignition interlock devices—the breathalyzer tests some people are required to install in their cars after getting a DUI—range from about $50 to $100 per month. As for how often individuals have to pay, it is entirely up to the courts. Most people are tested once or twice a week—or even just a few times a month, depending on the severity of the offense—but as Keck discovered, that number can go up drastically.

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As part of her probation sentence, Keck was required to attend a Mothers Against Drunk Driving seminar but was given no formal treatment for alcoholism. The most demanding mandate was, by far, her drug tests. As she put it, “Basically all I had to do for a solid year was drug testing … There was no follow-up. They didn’t care if I was actually getting clean.”

Average urine tests can’t detect alcohol, so Keck was instructed to take an ethyl glucuronide urine test. Today these tests generally cost around $25 a piece, with some testing centers charging $75 to $100, but Keck was lucky—she only had to pay around $12 to $15 per test in 2012. It was the frequency of the tests that hit her pocketbook the most. Working as a waitress while also paying for living expenses, textbooks, and other school-related costs, Keck says she got by, but just barely.

Like many college students, Keck liked to drink with her friends. She says she was able to recognize that she was a problem drinker, but without any evidence-based treatment offered as part of her probation, she didn’t have much motivation or help discontinuing use. Instead of actually ceasing her drinking, she researched ways to get around the test. She discovered that if she drank about 10 cups of water before providing the sample, she could dilute her urine to the point that alcohol metabolites would be undetectable.

“I kept getting false negatives because I kept having diluted pee,” Keck admits. “Because of the false negatives I started having to go three to four times a week.” By the end of her probation she was required to test six days a week, costing her close to $100 weekly in drug testing fees alone. That doesn’t account for transportation costs or other probation fees, like the cost of classes and a mandatory donation to Mothers Against Drunk Driving.

Some might say it was Keck’s own fault that she had to test so much. After all, if she simply quit drinking, she could have passed without raising suspicions. But addiction is defined by the inability to stop despite negative consequences. It makes sense that someone faced with a penalty but no treatment would have difficulty discontinuing use.

“I’m not drinking and driving,” she says. “I don’t want to deal with that anymore. So at least that aspect worked out, I guess.” Nevertheless, she admits to nursing a hangover during the interview. Maybe there’s one less drunk driver on the streets—certainly a good thing—but it seems Keck’s money could have been better spent in a treatment program that provides real help for her problem drinking.

It’s not just people who “cheat the system” who are paying exorbitant costs. Kenny Ernst was placed on probation in Palm Beach County, Florida for one year in 2016 on a petty theft charge. He traded five years in prison and a felony larceny charge for the year of probation, which is a common trade-off among people who accept plea deals instead of going to trial. But unlike prison, probation shifts the financial burden of the sentence from the government to the probationer—and drug testing fees are no small part of that burden.

There are currently 3.7 million people on probation in the United States and 840,000 on parole. Arrest rates are already considerably higher for people of color and low-income individuals, especially for drug-related offenses. Because probation is often offered as part of a plea bargain, low-income offenders who can’t afford private lawyers or trial costs are more likely to become caught up in this financially demanding system.

Ernst, who studied photojournalism in college before becoming addicted to heroin, says he was stealing to fuel his addiction, which was in full swing when he was arrested. Opioid addiction is notoriously difficult to kick; in Ernst’s case this was one of many relapses during his long struggle for sobriety. Unlike Keck, Ernst entered a recovery program and managed to kick his habit in order to genuinely pass his drug tests. Unfortunately, the probation fees prevented him from enjoying the financial benefits that should accompany the cessation of an expensive drug habit.

“I paid 50 dollars a visit [to my probation officer],” he says, “and 25 whenever I had to be drug tested.” Probation drug tests are random, so Ernst essentially had to be ready with $75 at all times, just in case. He says he had to take up to three tests per month, in addition to regular probation visits.

In response to the question of whether probation helped his recovery, Ernst said “absolutely not.” “If anything, it made you want to use more. Imagine the pressure. Bills are hard enough to cover, then I have to go in and pay for a drug test.” He describes days when he would have $100 set aside for groceries, until he got the call that he needed to come in for a test. Suddenly that $100 was reduced to $25.

If someone doesn’t have the money for the drug test, probation officers get to decide whether or not to “violate” someone, which could lead to incarceration. The single time Ernst didn’t have the money for his test, his probation officer let him off the hook until he was able to borrow the $25. But that was a choice; if his probation officer had been in a bad mood or simply didn’t like him, Ernst could have been sent to jail or prison.

It’s supposed to be illegal to incarcerate people for being unable to pay debts, but court-ordered fees like probation and drug testing open the doors for exactly that. Human Rights Watch has published several reports following the stories of low-income people involved in probation who have experienced consequences like homelessness and imprisonment due to the cost demands of these programs.

Ernst and Keck were relatively lucky. Their finances were consumed by drug testing and other related fees, but they were able to pay. What about those who aren’t? Some judges will waive fees when clients can prove they are indigent, but again, that’s the judge’s choice. For many who are caught up in a substance use disorder, the difference between freedom and incarceration is little more than dollars and chance.

Then, after a while, you get used to them. They get worse; they multiply. But you stop noticing. Eventually, you flick them off your body like nothing. You watch with dull reserve when you uncover yet another nest. They become a part of your life. Once you have roaches, you can never really get rid of them—you can only try to mitigate their effects.

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Women have been dealing with a lot of roaches. The viral MeToo hashtag has brought to light the horrifying impact of sexual and physical assault against women, which is an inarguable advance from the (sometimes not-so-distant) times when violence against women was so widely accepted it was used to sell household products. Like any powerful social movement, however, it has its critics. “Why now?” has become one of the biggest questions detractors are asking. If this is such a major problem, why didn’t survivors come forward earlier? Why do so many still hold back from reporting, or testifying in court?

People still ask me those questions. They ask even though it’s 10 years after the end of my abusive relationship, and even though I still live in a world overrun by my trauma. They ask even though providing the testimony that would incarcerate my abuser meant inviting a lifetime of PTSD, which arises only in the aftermath of trauma, when the long-used survival mechanisms fail to shut off.

The events that took place between the ages of 15 and 20 remain trapped in my body like shrapnel too precarious to be extracted. They are distanced from the rest of me by dissociation and selective amnesia; psychological post-traumatic scar tissue. I can’t always recall the details attached to each trigger, but I know them by their symptoms: anger, shame, debilitating self-doubt, panic attacks, suicidal ideation, substance use, an unshakable sense of not belonging.

I didn’t know exactly how much the aftermath would hurt until I finally walked away, but I had inklings every time I tried. I would spend days cycling between joy and misery; torn between my desire to live free from violence, and the despairing knowledge that healing would require painful, arduous work. When I finally testified, it was in spite of myself. I had already recanted previous reports countless times before I finally gathered the courage to stand my ground.

Domestic violence is so intensely damaging because it is personal, targeted, isolating, and private, but that pressure to recant is nearly universal. In a 2011 study of abuser-victim dynamics, Amy Bonomi and other researchers listened in on recorded conversations between jailed male abusers and their female partners. In 17 of 25 pairings, the abuser was able to convince his partner to recant her testimony (the other conversations were inaudible or included people who were not the primary victim). All of these conversations followed a pattern: The abuser first minimized the assault, then elicited sympathy from his victim by describing the hardship of life in jail, before romanticizing the “good times,” bonding over a shared dislike of a hostile authority figure, and finally requesting that she recant.

Given the likelihood that victims recant, it’s no wonder prosecutors seemed concerned when my abuser’s conviction hinged on my testimony. The county assigned me a victim’s advocate who coached me through the court process and periodically checked in on my welfare and willingness to speak in court. But after the sentencing, it was four years before I heard from their office again—and then only to meet with me briefly about his release. I was not set up with a network of trauma care workers. Nobody followed up to learn whether I had stable housing, or how my job search was going after school. I was left alone to deal with the aftermath, and 10 years later I am still struggling to overcome that oversight.

Studies have found that women who survive intimate partner violence suffer myriad long-term physical and mental consequences. (Although domestic violence happens across the gender spectrum, it is most common between male assailants with female partners; because of this, most research focuses on couples that fit this dynamic). Digestive problems, eating disorders, issues with reproductive organs, headaches, and blackouts are some of the most common physical ailments associated with domestic violence. PTSD develops at a 74:3 ratio in women who have been abused versus those who have not.

I’ve always lived below the poverty line, but before developing PTSD, I never struggled for what I really needed. The aftermath of abuse left me floundering for everything. No one warned me how hard it would be to stay alive after the relationship was over. I was able to complete graduate studies in writing, but not without a good dose of heroin—and that, of course, came with its own set of debilitating consequences. Before building enough contacts and credits to work as an income-earning freelance writer, I was mostly unemployed, occasionally bouncing between telefunding jobs, and constantly struggling to keep my family housed and fed. Even recently, when my husband suffered a costly health complication, we ended up with an impending eviction that we were only able to skirt through an online fundraiser.

The financial devastation I experienced is not unique. Since the 1990s, health officials have known that battered women experience significant interruptions to their jobs that include unemployment, missing work, being late or leaving early, and even being fired. More recent data confirm that financial insecurity continues to be a major issue for abuse survivors—domestic violence is thought to account for a combined total loss of 8 million work days each year. Couple that with the fact that 99 percent of women who are physically abused also experience financial abuse, and the well-recorded difficulties associated with escaping poverty (especially if mental illness is involved), and you begin to see a very grim picture—one that leaves already-vulnerable victims struggling to access enough resources to survive.

Survivors of intimate partner violence should not disappear into a black hole after escaping the abuse, nor should we assume they are okay just because they are “safe.” The evidence says they are not. And so, six months into #MeToo, we need to start dealing with the wreckage.  #MeToo allowed women to realize that they were not alone—that many of us have cockroaches, and the filth does not belong to us. #MeToo allowed women to let out a long-awaited sigh of relief. But it also triggered some survivors, who weren’t ready to face their trauma. It made women feel guilty for not being ready. It made those on the outside think that sending the aggressor to prison was the end of the story. It made people forget that domestic violence survivors still need help, even after the relationship ends.

There is no longer any basis to argue that domestic violence doesn’t have a long-term physical, psychological, and financial toll. The question is now, what are we going to do about it?

The first day I stood in the courtroom, all I had was my story. I prepared to tell the judge that I had been groomed by the man seven years my senior since I was 14; that I had been kidnapped, drugged, beaten, bitten, strangled, and raped. I prepared to tell her that the last time we were alone together, the petitioner strangled me while I was holding my infant son until I had a seizure and dropped my baby. I prepared to tell the judge that my son was now an eight-year-old boy who still wore diapers and could not speak, while I was in recovery from a heroin addiction that had, for many years, been my only means of coping with the PTSD.

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My abuser came to court equipped with an attorney. His lawyer was a tall man with an olive complexion and an easy self-confidence that he showcased by strolling through the courtroom, addressing the clerks by name and punctuating their interactions with a rolling belly laugh. My abuser’s attorney had all the papers in order. I, attorneyless, did not.

When the judge entered she told me I needed a lawyer, and offered me a continuance I didn’t know I could request. I took it, thinking it would give me a little more time before my son would officially belong to the man who had terrorized me when I was little more than a child myself. I knew the continuance would ultimately make no difference; there was no attorney I could afford.

This type of legal divide is not uncommon. According to the American Psychological Association, abusive fathers file for sole custody more often than fathers who have no history of domestic violence. Since 99 percent of domestic violence victims also face some form of financial abuse, abusers tend to have more money and thus more access to legal resources than the women fleeing their abuse. That gives them an advantage in the courts that makes them just as likely, or even more likely, to gain custody.

These prolonged legal battles can turn into an abuse of their own. Court-related abuse—sometimes called litigation abuse—is a widely under-recognized phenomenon in which a perpetrator of intimate partner violence will use family law court as a means of maintaining contact with their victims, even when legal protections would otherwise forbid it. Women and their children who have endured horrific abuses, including sexual molestation and rape, can be forced to interact repeatedly with their assailants in the courtroom upon escaping the relationships.

My abuser discovered his judicial advantage in 2016. I had a five-year protective order against him, a length of time I was told is rarely granted except in cases of extreme violence. But even that did not stop my abuser from dragging me to court.

Unlike many women, I got lucky. I won a lottery for a pro bono attorney through a program offered by my county that mentors licensed lawyers hoping to switch from their previous specialty to family law. These lawyers are only available—in limited quantity—to domestic violence survivors involved in custody cases where a child faces significant danger should the outcome favor the opponent. My attorney’s previous specialty was personal injury law. My abuser’s attorney had been practicing family law for decades. He filed claim after claim trying to dispute my testimonies, forcing me to recount abuses I hadn’t even yet addressed in therapy, and painting me as the negligent junkie who abandoned my son and couldn’t even keep a home clean.

When the case was over, I asked my attorney if she still planned to pursue family law. She said no.

After a year of litigation that included a comprehensive assessment by a child’s advocate, threats of Child Protective Services involvement, numerous courtroom proceedings that placed me side-by-side with my abuser, and an attempt at mediation, my abuser got bored and gave up his parental rights. Or maybe his new girlfriend became angry that he was giving me so much attention. Or maybe he litigated himself out of money, though that’s extremely rare in these types of cases. I don’t know. What I do know is that my son’s biological father now gets to put his name on the birth certificate. I know that I still have a domestic violence protection order, but it no longer covers my now-10 year old son, who is nonverbal and cannot call for help or tell anyone if he is harmed.

During the proceedings, I lost my job as a fundraiser. I began hallucinating the face of my abuser over the faces of men who resembled him, which made me afraid to leave my home. I had to start taking medication for trauma nightmares that made me dizzy if I stood up too quickly in the morning. I also relapsed on heroin, briefly, and take medication now for that too. Before the case began, my PTSD centered on events in the past. Now I have to be scared of the future: of the possibility that my abuser will come after my son and me again.

Litigation gave him freedom to pick at the most private things about me. I had to defend the reasons why my son didn’t live with me. I had to defend how and why I have PTSD. I had to reveal my addiction and treatment history, and then defend that too. On the other hand, I learned very little about my abuser. What I did learn was that he has a new girlfriend. She is not yet fully fluent in English, which fits his pattern of bouncing between underage girls and women who are new to the country and language. I learned that he lives with his girlfriend on a small piece of land outside of the city. I heard they raise chickens, and that on some weekends his girlfriend’s daughter—a young girl who has begun experimenting with hair dye—stays overnight.

Editor’s note: To protect the privacy of certain individuals, identifying details have been changed. 

One thing I know there is none of in Omelas is guilt.

– Ursula K. Le Guin, “The Ones Who Walk Away from Omelas”

Earlier this year, National Geographic published an article claiming to have discovered the 25 happiest cities in the United States. The measurements were based on a scale developed by Gallup, with input from Dan Buettner, who has spent decades traveling the globe in pursuit of the roots of happiness. Even with all that experience, Buettner’s findings (reported in the article by George Stone) seem to overlook one glaring problem: American happiness appears to be rich and white.

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The city that tops Nat Geo’s list this year is Boulder, Colorado. Boulder is a small town nestled in the Rocky Mountains, known for its biking paths, clean air, and youthful population; the latter of which can be attributed to the fact that it is home to the University of Colorado Boulder (CU) and Naropa University, in addition to several specialty and trade schools. Naropa University includes the writing school that was founded by beat writers Allen Ginsberg and Anne Waldman. It’s also where I attended grad school.

Before I moved to the city, I had farewell drinks with a friend and a schoolmate he brought along, an Asian woman who spent one short academic year at CU before bolting.

“It’s the most racist place I’ve ever been,” she told me upon learning where I would soon be moving. “Everyone there is white, and if you’re not,” she swiped her hand through the air as though swatting away a bug. “It was like being Asian made me an alien,” she added.

There was a moment of silence as I thought about my Cuban heritage, and whether I’d fit into the city that Nat Geo this year described as “bolstered by a sense of community, access to nature, sustainable urban development and preservation policies.”

Then my friend (a white gay man, if you’re wondering), said, “Oh, don’t worry, you pass.” Ultimately, he’s right. I do “pass.” My skin is olive-toned but not brown, my eyes are hazel, and my hair is a shade that in Latino communities is considered rubio, which roughly translates in English to blonde. I did not personally experience the racial alienation my drinking partner described that evening, but I saw and experienced other events that made the generous smiles, the lavish, clear-aired sunsets, and the folded yogis in the parks all seem like part of a deeply exclusionary facade.

     *                            *                            *

In the short story “The Ones Who Walk Away from Omelas,” author Ursula Le Guin describes a city of immense but ambiguous happiness, where “the air of morning was so clear that the snow still crowning the Eighteen Peaks burned with white-gold fire across the miles of sunlit air, under the dark blue of the sky.” There, in Omelas, the people “were mature, intelligent, passionate adults whose lives were not wretched.” But buried somewhere out of sight, in a small windowless room, an emaciated child sits alone. Le Guin describes its fear and decrepitude; the terrible squalor of its existence, and the feeble, hopeless waste of its mind and body. The child is always referred to as “it,” because to imagine an actual human being treated this way is beyond comprehension.

But, Le Guin explains, the people of Omelas have had to make a choice. “If the child were brought up into the sunlight out of that vile place, if it were cleaned and fed and comforted, that would be a good thing, indeed; but if it were done … that would be to let guilt within the walls.”

And so the Omelans reason that it is simply a matter of math. Every life in the city stays joyful and beautiful—and the one that is not is hidden.

     *                            *                            *

National Geographic writes that in the happiest places, “locals smile and laugh more often, socialize several hours a day, have access to green spaces, and feel that they are making purposeful progress toward achieving life goals.”

This type of happiness, the article admits, relies upon wealth. What it doesn’t mention outright, however, is that for an entire city to be dubbed “the happiest,” poverty cannot play a significant factor. In Boulder’s case, this is not because the social problems that cause poverty have been fixed, but because the poor have been pushed out.

According to data from the U.S. Census Bureau, 88 percent of Boulder is single-racial white. The median single-household income is just under $60,000, and the mean a whopping $90,000. Median monthly housing costs are reported at $1,320, with the number of renters and homeowners roughly the same (in 2015, there were only about 2,000 more renters than homeowners). This should be surprising, considering the fact that Boulder houses two universities, and the average student does not own the home she lives in. While I was there, I watched a slow, quiet change take place; one that I doubt many of my mostly white and affluent grad school cohorts noticed. It was something I saw not from my vantage point as a grad student at the Jack Kerouac School, but as someone addicted to heroin, who would, while in Boulder, eventually become homeless, pregnant, and on methadone.

First, the natural food markets—which were more available than average grocery stores—began stocking security guards alongside their expensive, organic products. Then the city discretely installed security cameras near the Boulder Public Library, which were able to spy on Central Park—once a favorite hangout spot for the city’s small homeless population. Wayne, a local methadone patient who asked me to change his name for privacy purposes, tells me there is no longer a homeless presence at that location—or, he says, much of anywhere in Boulder. That’s not surprising, since the city passed several ordinances that essentially prohibit homelessness: They outlaw sleeping in vehicles, “aggressive begging,” and public camping.

My methadone clinic used to be located just off Pearl Street, the beflowered street pictured in Nat Geo’s article.  A short while after I left the clinic in late 2012, it moved from Boulder to Longmont—Boulder’s poorer, browner neighbor to the north. It remains there, in a large, unattached building that stands near several bus lines but away from any downtown area. Wayne has been a client there since August of this year, previously attending the sister location in Denver. He was never a patient at the Boulder location, but works as an Uber driver and tells me over Facebook that the attitude toward addiction and poverty has shifted dramatically in Boulder over the past several years.

“The influx of new wealthy people from all over the country … has made people more judgmental and ignorant,” he says.

And what of the other cities that top National Geographic’s list? Number two is Watsonville, California. Although Santa Cruz County, where Watsonville is located, hosts a heavily Hispanic and Latino population, Watsonville itself is, again, mostly white—a shift that has climbed steadily since 2010. Rent averages around the same as in Boulder. Charlottesville, Virginia, earned third-place on the measure of happiness, even after making national headlines for hosting a violent white nationalist rally. It is around 70 percent white, with a mean household income just under $90,000.

Perhaps these facts are not surprising. Perhaps we have known, all along, that money does in fact buy happiness.

When I look at the photos and blog posts from my classmates who are still in Boulder, it appears relatively unchanged. Ravishing sunsets frame wine glasses adorned by a backdrop of lush mountains. Pearl Street’s clean red bricks look as pretty as I remember against the quaint boutiques that line the street. In these photos, everyone is smiling. It’s envy-inducing, for sure.

But then I remember how, when I was in Boulder just a few years back, the photo of Pearl Street that heads the Nat Geo article could not have been taken without a street performer or beggar in sight. How the methadone clinic was pushed north, and along with it, I’m sure, all of those clients seeking refuge from addiction. The measure of Boulder’s happiness is not only healthy eating and learning new skills, but also a practiced ignorance of those who are suffering or in need.

One thing I know there is none of in Boulder is guilt.

By the time I learned I was pregnant, I knew abstinence didn’t work. I also knew I had to do something if I wanted to have a healthy baby. So, I enrolled in methadone maintenance treatment. My doctor insisted on it—he told me it would keep my body from going through withdrawal, which could have caused a miscarriage. But I almost couldn’t afford it. I was in Colorado, one of 17 states that did not cover methadone through Medicaid or state funds. Luckily, I was able to get my treatment paid for through grant money specifically designated for pregnant methadone patients.

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Because of that grant, I never had to worry about the cost of my treatment. I was able to stand to the side and watch while other patients came into the clinic, begging for an extra couple days to come up with their fee, only to receive the same response from the receptionist: “You could get together money for your drugs, why are you having a problem getting money for treatment?”

I lost count of how many times I heard her say that.

Approximately 2 million people in the United States are addicted to pharmaceutical opiates, and half a million to heroin. The latest report from the Centers for Disease Control and Prevention estimates more than 60,000 overdose deaths in the United States last year. Opioids are now more fatal than car crashes and gun violence. And those numbers don’t include the many people who survive but live with complications such as brain damage for the rest of their lives.

Despite the broad scope of the crisis, data compiled by Rockefeller University’s Addictive Diseases lab show that there are only about 350,000 Americans in methadone treatment, a long-acting opioid agonist An agonist is a chemical that binds to receptors and causes a biological response (in the case of opioids, that response is pain relief). Methadone is an opioid agonist that causes a similar biological reaction to opioids without the euphoric high, preventing the severe physical symptoms of withdrawal. that has historically been the gold standard of care for opioid addiction. Only about 75,000 are in buprenorphine treatment, a newer alternative that is similar to methadone in function and purpose.

There are some basic reasons that so few people receive treatment: More than 30 million people live in counties without a licensed provider of buprenorphine, and the daily process of receiving methadone maintenance treatment at a specialized clinic is incredibly time consuming.

And it’s expensive.

In addition to the limits on Medicaid funding, opioid treatment providers can decide whether or not to accept private insurance. Many decide against it, or contract with just one or two providers, because methadone treatment is difficult to translate into insurance billing terms. Every state provides coverage for buprenorphine/naloxone (naloxone is an additive that prevents abuse of the drug), but patients often have to find cash for treatment regardless of whether the medication itself is covered.

The National Institute on Drug Abuse estimates that the per-patient cost of methadone for providers is $4,700 yearly, but for-profit opioid treatment programs get to decide what they charge their patients. This means the actual cost to patients varies by clinic. Methadone patients I interviewed reported rates that ranged from $350 per month to $200 per week. Buprenorphine patients reported clinic costs between $100 and $300 per month, with medication costs broaching the thousands for those without insurance.

Zac Talbott owns two opioid treatment programs—one in Georgia and one in North Carolina—and is also a methadone patient (through a different provider). He explains to me over the phone that just because Medicaid covers methadone in a certain state, that does not mean the clinics actually accept it. Take Georgia, for example: Although Medicaid has covered methadone for several years, programs that were not directly affiliated with behavioral health entities could not bill Medicaid prior to 2016. Only two clinics met that standard, out of 62 in the state. The rules recently changed, and Talbott’s Georgia clinic, Counseling Solutions Treatment Centers, is now six months into the process of setting up Medicaid billing. He’s unsure how many other area clinics will actually take on the new insurance option.

“[Opioid treatment programs] don’t speak in insurance terms the way the rest of health care does. Insurance bills based on codes. There’s no code for a daily bundled rate,” he explains, referring to the daily or weekly flat-rate most clinics charge their patients.

“For a lot of the bigger corporate entities, it’s easier and more profitable to just take that cash, baby,” Talbott adds, punctuating his point with a morose chuckle.

Patients who struggle to find the money for treatment may live with the threat of an administrative detox hanging over their heads. This is a common technique practiced by many methadone clinics, in which a patient who is no longer able to pay is placed on a rapidly tapering dose to wean him off the medication. The length of these tapers varies by clinic, but they often mean going down by 10mg a day, usually with one- or two-month limits. That’s a far cry from the slow, medically supervised taper recommended for patients choosing to withdraw from treatment.

Medication-assisted treatment is designed for long-term use—sometimes even lifelong. Mary Jeanne Kreek, who was part of the team that developed methadone treatment, explains that methadone and buprenorphine help correct brain changes that may require years of maintenance.

“It’s just like treating depressive disorders. Most people on chronic antidepressants need those for a long time or life,” says Kreek.  “I think they’re very analogous.”

But even these administrative detoxes are less harsh than what patients face at clinics that simply cut them off. Because methadone is designed to remain stable in the body for long periods of time, withdrawal from a therapeutic dose may take up to a week to begin. Once it does, however, it is nearly unbearable. It’s not necessarily the sweats and cold chills, aching bones, diarrhea, racing heart, nausea, and restless legs that make it so difficult. It’s the fact that your brain thinks it’s dying without the drug. That is part of the reason relapse rates after opioid detoxification are so high—some estimates say 88 percent within three years, and up to 70 percent within six months.

Liz Hock Clark, a 59-year-old woman who has been on methadone for 34 years, says her clinic is one of many that simply ceases to dose patients who come in without payment in hand. She isn’t sure if it’s legal, but she’s seen it done, and she’s terrified it will happen to her.

Clark lives in a small apartment in West Virginia. She doesn’t have much furniture, and there’s no internet connection. If she needs to go online, she hops into her beat up 2000 Chevrolet Cavalier and drives to her cousin’s house. She picks up odd jobs, like house cleaning and dog walking, in order to pay for her medication. She does janitorial maintenance for her building in exchange for rent on the apartment. It’s tough on her body, but it allows her to put every penny she makes into methadone. Her clinic charges $15.50 a day. She says when she started methadone 34 years ago in Texas, it was $2 a day. She is terrified of the day when she doesn’t have the money for her clinic, which she fears will be soon.

“I’m not afraid of relapse,” she explains in her soft Southern drawl. “I’m afraid of dying. For someone my age, going cold turkey off 118 milligrams, I don’t know if I’d survive.”

Death from opioid withdrawal is rare, but because of her age, complications like cardiac arrest from a harsh detox are a credible fear.

“The thing is,” she adds wistfully, “I don’t want to get off methadone. I want to stay on it my whole life.”

How do we help patients like Clark access these essential medications without becoming enslaved by the exploitative tactics of some providers? For starters, the burden of methadone and buprenorphine regulations needs to fall on providers rather than patients. And we need to have a lot more payment options for low-income people, who are already more vulnerable to addiction in the first place.

The preliminary report offered by the White House opioid commission asks for expansion of access to medication-assisted treatment. It does not, however, express the need for a mandate on clinics to accept Medicaid, or for any kind of internal restructuring that will make accepting Medicaid and other forms of insurance more attractive to clinics. Trump’s attitude during his recent public health emergency declaration does not leave much hope that the commission’s advice will be followed—his $57,000 allocation will not come close to covering the cost gap. We’ll need to do a lot more if we are going to serve Clark and other patients like her—or like me—before it’s too late.