Browsing: Education

by Adriana Gallardo, Anna Clark and Mariam Elba

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Expecting parents want to do the right thing. When the doctor suggests a prenatal screening test, many say yes. Learning more about the baby-to-be seems like it has no downside.

But they often don’t realize these popular tests aren’t regulated by the U.S. Food and Drug Administration. This means that no federal agency makes sure that marketing claims are backed up by evidence before the tests reach patients. Even many health care providers find it hard to understand their nuances.

Testing companies told ProPublica that, even without the FDA, there is significant oversight over the screening tests. They said health care providers, who order them, should make sure patients understand what they can and cannot do.

That’s not always how it plays out. We published an investigation about this: “They Trusted Their Prenatal Test. They Didn’t Know the Industry is an Unregulated ‘Wild West’.” During our reporting, we heard from more than a thousand people in six countries, 47 states and Washington, D.C., about their experiences with noninvasive prenatal screening tests — often called NIPTs, or NIPS. Several reached out after reading our story.

We heard from a lot of people who were grateful for the screenings. They gave them peace of mind. But others told us they were left confused, frustrated and sometimes even shattered. We also heard that it can be difficult to find independent information about NIPTs.

This guide is meant to help fill the information gap. It includes basics on what the tests are, how to understand the results and even a glossary for the many confusing terms test-makers toss around. Our information is based on hundreds of conversations with parents, health care providers, researchers, genetic counselors and other experts. If you or your family is considering an NIPT, or you’re trying to understand your results, we hope this will help. We also encourage you to do your own research and consult with doctors or genetic counselors you trust.

Table of Contents
What is noninvasive prenatal genetic testing?
Understanding your NIPT results
Paying for an NIPT
NIPT glossary
Get in touch with our reporters

What is noninvasive prenatal genetic testing?

What are NIPTs?

Noninvasive prenatal tests, or NIPTs, screen for an array of rare genetic conditions. In most cases, the results will say that a genetic condition is unlikely. In some cases, they will flag a possible issue.

Here’s how it works: A health care provider takes a blood sample. They send it to a lab for analysis. The lab looks for cells from the placenta that float in your bloodstream. They can give a picture of the fetus’s development. The cells don’t come directly from the fetus — that’s why this is a screening test, not one that gives a more definitive diagnosis. The lab then lets you and/or your doctor know what the screening found.

You can get a screening as early as nine weeks into pregnancy.

Are NIPTs the same as NIPS?

Yes. Many health care organizations call them NIPS (noninvasive prenatal screening) instead of NIPT (noninvasive prenatal test).

There has long been concern about the name. Some experts say that calling it a “test” implies the results are more certain than they really are. In the industry’s early days, some even called it noninvasive prenatal diagnosis, or NIPD.

They’re also sometimes known as cell-free DNA screening tests, or cfDNA tests.

What do NIPTs test for?

NIPTs check for genetic conditions that can affect the health of the fetus. This includes trisomies, or extra chromosomes. The standard bundle of tests usually checks for these conditions:

Down syndrome, also known as trisomy 21
Edwards syndrome, also known as trisomy 18
Patau syndrome, also known as trisomy 13

It may also check for unexpected numbers of X or Y chromosomes — one or three, for example, instead of the usual two. These are called sex chromosome aneuploidies. They may be associated with certain health and developmental issues.

Companies may offer extra tests, too, which they often describe as “premium,” “plus” or “advanced” options. These tests screen for even more genetic conditions. But the American College of Obstetricians and Gynecologists, the leading professional society for OB-GYNs, doesn’t recommend that doctors offer them to patients. Also, as the New York Times reported, when the extra tests have a positive result, they are “usually wrong.”

NIPTs don’t screen for nongenetic conditions, such as heart defects. For younger people, nongenetic conditions may be more likely to affect their pregnancies.

Are NIPTs regulated?

NIPTs are not regulated by the FDA. No federal agency checks to make sure they work the way they claim before they’re sold to health care providers. The FDA doesn’t make sure that marketing claims are backed up by evidence before screenings reach patients. And companies aren’t required to publicly report instances of when the tests get it wrong.

Testing companies said that, even without the FDA, there is still significant oversight. Labs must abide by state regulations, and another federal agency, the Centers for Medicare and Medicaid Services, monitors quality standards. It does not, however, check whether the tests the labs perform are clinically valid.

You can read more about this in our investigation about the prenatal testing industry.

Are NIPTs the “gender reveal” test?

Yes. Hundreds of women told us that this early chance to learn the likely fetal sex was the main reason they got screenings.

Experts emphasize that NIPTs should be treated primarily as a genetic screening test, rather than as a way to learn the likely sex early.

It’s rare, but there is a small possibility that the tests will predict the sex incorrectly.

What if I want an NIPT, but don’t want to learn the sex?

Let your doctor know. Testing companies can deliver results in a way that doesn’t disclose the sex. Know that if the screening is positive for some conditions, such as Turner syndrome, it may reveal the sex by default.

Are there other prenatal screening options besides NIPT?

Yes. ACOG and the Society for Maternal-Fetal Medicine, the leading professional societies for doctors who handle pregnancies, wrote about the different prenatal screening options in their guidance on NIPTs. Each test has benefits and limitations. It said that health care providers should discuss NIPTs, along with other screening and testing options, with expectant parents. Counseling can help you decide what to choose.

ACOG also has a FAQ about screening options.

How are NIPTs different from carrier screenings?

Carrier screenings calculate the chances that a person could pass an inherited condition on to their future child. They analyze a blood or tissue sample from one or both prospective parents to learn about their genetic makeup.

NIPTs, on the other hand, use a blood sample from the pregnant parent to analyze cells from the placenta and learn more about the possible genetic condition of the fetus.

I’m not sure if I should get an NIPT. How do I decide?

Deciding whether to get an NIPT depends on your personal situation. Your age, your health and how far along you are in pregnancy are all important considerations, as are your concerns, values and questions.

Your health care providers and, ideally, a genetic counselor can help you decide if an NIPT is a good choice for you. To think through the benefits and limits, you might want to check out these resources:

ACOG’s guidance on NIPTs
ACOG’s FAQ on prenatal genetic screening tests
The FDA’s safety communication on NIPTs
The Genetic Support Foundation’s Pregnancy 101 guide
The r/NIPT Reddit community

Also, in the next section of this guide, you’ll see more information on factors that affect the performance of the screenings.

Katie Stoll, executive director of the nonprofit Genetic Support Foundation, said it’s important to weigh what information from a screening will mean for you. She suggested reflecting on the following questions:

How would you feel if results indicated a higher chance for a genetic condition or birth defect?
Would you consider a diagnostic test, such as amniocentesis, if the NIPT indicated an increased chance for a genetic condition?
— If not, would you be okay waiting until the baby is born to know for sure if the condition is present?
Do you think this information would help you feel more prepared?
Does more information that comes with the possibility of uncertainty make you anxious?

Rachel Ray, 36, of Binghamton, New York, said it’s also important to have honest conversations with your partner or loved ones.

“No one expects the results to come back positive, or worse, false positive,” said Ray, who had the test in 2019. For those who haven’t had these conversations ahead of time, she said, “this kind of result could cause a huge ripple effect on a relationship.”

We heard from many people who were happy they got these tests. They said that it was helpful for making decisions about pregnancy and future parenting.

Others said their experience of the tests was traumatic. Alexis Reprogle, 28, from Fort Wayne, Indiana, had an NIPT that came back with inconclusive results. When she got a second screening, she said, it was positive for trisomy 18. But further testing showed that it was a false positive. Her daughter, now 2, has no unusual genetic conditions. “I wish I never would have taken the test,” said Reprogle. “It caused so much stress and the need to go back and forth with the insurance company over costs.”

Still others said their decision about the screenings is affected by state laws that ban abortions or restrict them to early in pregnancy.

In many states, abortion bans start before you will be able to confirm the screening results with a diagnostic test. In some places, they become restricted before you can even get the screening.

To stay up to date on the policies affecting you, The New York Times is tracking the current legal status of abortion in all 50 states and Washington, D.C.

What happens if I say no to the NIPT?

You have a right to say no to testing, said Mary-Nevaire Marsh, 34, of Atlanta. In 2020, she had a false positive for trisomy 18.

“It is meant to be a conversation,” Marsh said. Doctors “are an expert in their field, and you should be going to them for advice and counsel, but ultimately, the decision is completely in your hands and yours alone.”

If you’re anxious about this conversation, Marsh suggested bringing someone you trust with you.

“Bring a buddy or a partner with you if you feel like you’re going to need someone to help back you up,” she said. If doctors aren’t accepting your decision, she said, “say, ‘Let’s table it. We’ll talk about it next time.’”

“Another really good question to ask is ‘If we don’t do this, what other options are there?’” Marsh added.

Understanding your NIPT results

How accurate are NIPTs?

It depends. NIPTs are often quite good at identifying Down syndrome (trisomy 21) and Edwards syndrome (trisomy 18), especially for older parents who are more likely to have pregnancies affected by these conditions. They are less likely to correctly predict Patau syndrome (trisomy 13).

Test performance drops with the optional extra screenings that look for rarer conditions. The New York Times wrote about this: “When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong.”

What other factors affect the NIPT results?

A number of factors can affect the performance of NIPTs, though companies sometimes sidestep this in their promotional materials. Readers and experts told us that health care providers, too, may not be clear about it.

These factors may include:

Your age
Your body mass index (BMI)
Gestational age (how far along you are in the pregnancy)
Your race and ethnicity
Pregnancy by in vitro fertilization
Twin pregnancies or vanishing twins
If you have been the recipient of an organ transplant

Rachel Ray said her providers failed to mention that her weight could affect the performance of her screening. In 2019, she had a false positive for trisomy 18.

“If I had been informed that higher BMIs have a significant impact on the reliability of the NIPT, I would have still taken the test, but I would not have experienced nearly the amount of stress I did,” said Ray.

She’s opting to skip an NIPT for her current pregnancy in favor of other screening tests. “I have declined because I do not want to experience what I experienced the first time, as I am still obese,” Ray said. “So far this pregnancy has been healthy and uneventful.”

How do I read my NIPT results?

After you have an NIPT done, it can take a week or two to get your results. Companies report results differently. Some describe conditions as “positive” or “negative.” At least one company describes them as “high-risk” or “low-risk,” which, it said, is meant to reinforce that NIPT is screening and not diagnostic.

A positive or high-risk NIPT result means there may be a higher possibility that the fetus has a genetic condition. This can affect its health and development. A negative or low-risk result means a genetic condition may be less likely.

To confirm your results — or if you simply want to go straight for a more comprehensive testing option — you may want an amniocentesis or chorionic villus sampling, or CVS, test.

In some cases, there will not be enough information in the blood sample from your NIPT to report results. It may read as “inconclusive,” “no call” or “no result.” In general, inconclusive results suggest a heightened risk of the fetus being affected by a genetic condition.

If this happens, you can consult with your doctor about doing the screening again, or getting a diagnostic test.

I got a positive result! What should I do?

While you’re probably feeling a lot of fear, please remember the information is not definitive.

“It is important to remember that NIPT results, just like other screening results, do not give a ‘yes’ or ‘no’ answer to whether a pregnancy has a chromosome condition,” said Stoll of the Genetic Support Foundation.

Your health care providers should talk to you about diagnostic options for confirming or refuting the results. They may also refer you to a maternal-fetal medicine specialist. Your second trimester scans, instructions from your doctors and further testing can all help you learn more about your pregnancy.

You also may want to talk with a genetic counselor who can help you understand your NIPT results and think through their implications.

In some cases, a positive result may have implications for your own health. “This, too, can be discussed with your provider,” Stoll said.

Also, know you are not alone. The people we talked to say the weeks or months in between the screening and finding out for sure if it’s a true positive can be filled with anxiety.

“Find somebody who you can talk to who can just listen,” said Daniela Weiss-Bronstein, 43, of Westhampton Beach, New York. She appreciated how one friend put it to her: “Tell me all the things that are in your head that you can’t say.”

In 2015, Weiss-Bronstein was expecting her fourth child when an NIPT came back positive for Down syndrome. For her, dear friends and the Down Syndrome Diagnosis Network were the most supportive outlets as she struggled with her feelings about the result.

Mary-Nevaire Marsh recommends taking time to process, even when some decisions need to be made soon.“You do have time,” she said. It’s important to think through your options and “decide what really feels like the right thing for you and your baby and your family.”

If follow-up testing shows it to be a true positive, this will likely affect your birthing plans. Some people told us they decided to end their pregnancies after a diagnosis. Others adjusted their medical care and parenting expectations.

Weiss-Bronstein chose not to get a diagnostic test after her positive NIPT. She supports abortion rights, but she knew she wouldn’t end her pregnancy even if an amnio confirmed the presence of Down syndrome. To her, it seemed like an unnecessary risk to add to an already complicated pregnancy. It wasn’t until the day her son was born that she and her husband found out it was a true positive, an experience she and a friend chronicled in a comic.

For those who receive a positive test for Down syndrome, Weiss-Bronstein said she wishes there was more awareness about how modern interventions and support systems have improved life outcomes for people who have the condition.

I got a negative result! What should I do?

Many people said that a negative NIPT result is a huge relief. They told us that it gave them peace of mind during their pregnancies. True negatives are the most common outcome of the screening tests.

False negatives are extremely rare — far more rare than false positives or inconclusive results — but they do happen, as we reported in our investigation.

Second trimester scans and diagnostic testing can provide additional information about nongenetic conditions that may affect your pregnancy. Reader V.G. had a negative NIPT in 2019 and declined a CVS test. But she decided to have an amniocentesis to confirm the screening. Between the amnio and the NIPT, she felt reassured that all was well. (For privacy, she asked not to be identified with her full name.). For her, it was a very positive experience.

I got an inconclusive, or “no-call” result! What does this mean?

This happens when a lab is unable to provide information about the conditions it screened. There are many possible explanations for this, Stoll said, “and sometimes we are never really able to determine the reason.” It may be that the blood sample contained too low a percentage of DNA from the placenta. This is called “low fetal fraction.” Or it could be a problem with the shipping of the sample, Stoll said.

In general, an inconclusive result can signal a higher likelihood of a chromosomal condition. But it may not. Your health care provider may recommend a redraw of the blood sample for another NIPT, or a diagnostic test.

Alexis Reprogle in Indiana, who had a second NIPT after her first was inconclusive, said it’s sometimes helpful to wait to do further testing.

“Most of the time you will have your blood drawn again for a second test,” she said. “If you are feeling overwhelmed with anxiety over the entire process, you can always back out of the second test. You may have the option to wait a few more weeks, as this could provide a more accurate reading.”

How can I confirm my NIPT results?

Diagnostic tests, such as amniocentesis and CVS, offer the most definitive and comprehensive information about the health of the fetus. An “amnio” is a test that analyzes a small amount of amniotic fluid from the area around the fetus. CVS analyzes a small piece of tissue from the placenta.

Both are considered invasive tests, with a small risk to the pregnancy, though experts say it is extremely low.

I want more advice and guidance. Where can I find genetic counseling?

Genetic counselors are trained professionals who can help you understand the tests, think through their results and, potentially, prepare for a pregnancy affected by a genetic condition. ACOG’s guidance on prenatal screening recommends both pre-test and post-test counseling.

​​Some testing companies offer patients genetic counseling services with their on-staff experts. They typically offer these at no additional charge and some people said they received helpful guidance. But several experts we spoke to emphasized the value of genetic counselors who aren’t employed by labs. That way, you can be confident there are no conflicts of interest. Independent counseling may be more expensive, though.

A good place to start is talking with your health care provider about a referral to a genetic counselor in your area. The Genetic Support Foundation in Olympia, Washington, is one source for independent guidance on a range of genetic health decisions, including pregnancy. It offers telehealth appointments. (Stoll, GSF’s executive director, was a source for this guide.)

The National Society of Genetic Counselors offers a directory of in-person and telehealth options in Canada and in the United States.

Adriana Ludé, 36, of Oakland, California, enlisted a geneticist after she received an inconclusive result. She said it’s important to find a good communicator, not just someone with technical qualifications.

“Having someone who is able to explain it in simple words our overwrought and emotional brains could understand was huge,” Ludé said.

Weiss-Bronstein said those with positive results might also want to consult with a developmental pediatrician’s office. There can be waitlists, she said, but if you can get in the office, it gives you a chance to talk to someone who works with kids with these genetic conditions in real life. It’s a chance to ask, as she put it: “Not pie in the sky, and not doom and gloom, what does this actually look like?”

Speech and physical therapists who work with kids with these conditions can be helpful too, she said.

Paying for an NIPT

How much do NIPTs cost?

In our reporting, we heard about bills that ranged from a few hundred to many thousands of dollars, even for people who said they had good health insurance. We also heard from people who had the test covered completely by their insurance, or paid low-cost rates offered by the NIPT companies.

Stoll suggested asking your doctor for details about:

Which lab your testing will be sent to
Which conditions the test screens for
Which CPT codes will be used to bill for this test

Then, she said, you can follow up directly with your insurance company “to learn about coverage for the specific lab and codes being used.”

Patients give this advice:

Let your doctor know if you have limited funds. The practice may be able to budget for your care, or your doctor may be able to share information about financial assistance options.
Keep detailed records of your communication with the testing companies, your doctor and insurance company. Arbitrary billing was among the most common complaints we heard. Confusing pricing often led patients to make multiple phone calls to the labs and their insurers to get clarity on their responsibility for the cost.

NIPT Glossary

Aneuploidy: Broad term for conditions that involve an unusual number of chromosomes. (Most people have 46.)

Chromosomes: Thread-like structures in our cells that are made of our DNA. Together, they make a blueprint for our unique physical characteristics.

Fetal fraction: Percentage of DNA in the sample of the maternal blood that is from the placenta. If the fetal fraction is too low, it can result in an inconclusive, or “no call,” result.

False negative: When a screening shows a negative or low-risk result for a certain condition, but it turns out the condition is actually present.

False positive: When a screening shows a positive or high-risk result for a certain condition, but it turns out the condition is actually not present.

Karyotype: An individual’s complete set of chromosomes.

Prevalence: How common, or “prevalent,” a condition is in a certain group of people.

Positive Predictive Value, or PPV: The likelihood that a positive or high-risk screening result will prove to be true. If you get a positive result for a certain condition, this is an important indicator of how likely it is that the fetus actually has it.

Different genetic conditions have different PPVs. You can use an online calculator to estimate more personalized PPVs for certain conditions.

Microdeletion: A missing fragment of a chromosome, which can cause a number of rare genetic conditions, such as DiGeorge syndrome or Prader-Willi syndrome. Many testing companies offer optional extra screenings for microdeletions, as well as additional trisomies. But ACOG does not recommend them.

Monosomy: Term for having only one chromosome (“mono”) where there would usually be a pair.

Mosaic, or Mosaicism: When different cells have different numbers of chromosomes in them. Some cells might have the usual 46 chromosomes, but other cells might have 47 chromosomes. This can result in health issues. Mosaicism may also mean there’s a difference between the cells in the placenta — which is what an NIPT analyzes — and the cells in the fetus. This can lead to false positives or false negatives.

Negative Predictive Value, or NPV: The likelihood that a negative or low-risk screening result will prove to be true. If you get a negative result for a certain condition, this is an important indicator of how likely it is that the fetus is actually unaffected by it.

Different genetic conditions have different NPVs. You can use an online calculator to estimate more personalized NPVs for certain conditions.

Sensitivity: The proportion of those who have the condition who are correctly identified by the test. It is the “detection rate.”

Specificity: The proportion of those who do not have the condition who are correctly identified by the test.

Soft markers: Features detected in the fetus that aren’t necessarily related to a genetic condition but can be correlated with one. For example, shortened long bones in the arm and leg may be associated with Down syndrome.

Trisomy: Term for conditions with an extra third (“tri”) chromosome alongside one of the usual pairs of chromosomes. Down syndrome, for example, is known as trisomy 21 because it’s a condition involving three copies of the 21st chromosome.

True Negative: When a screening has a negative or low-risk result for a certain condition and it turns out the condition is indeed not present.

True Positive: When a screening has a positive or high-risk result for a certain condition and it turns out the condition is indeed present.

Have You Had an Experience With Prenatal Genetic Testing? We’d Like to Hear About It — and See the Bill.

Sophia Kovatch contributed research.

by Jeremy Kohler

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

Three months after a St. Louis public safety official said the city planned to review how off-duty police officers are used by private companies to patrol some neighborhoods, city officials said they had identified a consultant to do the work but were still looking for a way to pay for it.

The pledge to review police moonlighting came in September, after ProPublica revealed how the use of private police forces in St. Louis exacerbates disparities in how the city is protected. Deputy Public Safety Director Heather Taylor, responding to ProPublica’s findings, said the city would hire a consultant to study the issue.

Mayor Tishaura O. Jones said more recently that she intends to make changes to the private policing system to eliminate the disparities. “The well-heeled few, or those who pay extra taxes, shouldn’t get extra protection,” Jones said in a St. Louis Public Radio interview this month. “We all pay taxes in order to make sure that we get equal protection from our police department.”

The police department could be set for an overhaul with Jones’ appointment last week of its first chief from outside the agency in its 214-year history. Robert Tracy, the chief in Wilmington, Delaware, will start Jan. 9.

Tracy could not be reached; Jones and Taylor did not respond to requests for comment. But Monte Chambers, a program manager for the Public Safety Department, said the city planned to hire a consultant who is already working on another project for the city to review other policing issues, including the city’s private policing system.

The review would begin “once I have found a funding source,” Chambers said in an email last week.

Chambers did not respond to additional questions seeking details about the review.

While the publicly funded St. Louis Metropolitan Police Department struggles to deploy officers in visible roles across the city, ProPublica found that about 200 of them work part time for the city’s biggest private policing firm in some of the wealthier and predominantly white neighborhoods.

Unlike in other places where officers moonlight in security roles, St. Louis officers wear their city police uniforms and can investigate crimes, stop pedestrians or vehicles, and make arrests while working for private policing companies.

The investigation found that city employees working as private police officers were sometimes offered monetary rewards for working on specific cases and that St. Louis’ largest policing firm, The City’s Finest, employs many of the department’s highest ranking officers, including four of the six district commanders.

Some of those commanders sometimes work on trivial matters for their private clients while the police department struggles to deploy officers to parts of the city grappling with violent crime.

Jones, elected in 2021, has criticized policing in St. Louis as “inefficient and ineffective” and, in the radio interview, lamented that private policing makes the city stand out for its disparities. She has talked about restructuring the department and shifting funding to programs that try to prevent crime, such as mental health services and job training initiatives.

Megan Green, who in November was elected president of the city’s Board of Aldermen and is the city’s second-highest ranking official, said private policing was an issue that the new chief “needs to take up pretty quickly.” She also said the Board of Aldermen should examine the source of funding for private policing: the neighborhood taxing districts that raise millions of dollars a year.

Many affluent city neighborhoods have created taxing districts, the latest formed this summer in south-side Holly Hills. The districts are authorized by state law, but they periodically need to be renewed by property owners and the city. Green said the board could try to determine if “there are some taxing districts that need to be dissolved.”

“I think that the special taxing districts definitely create inequities in our city,” Green said. She said the city should “be more strategic about where special taxing districts are created. We historically have not had a lot of strategies around that as a city, which I think has created even greater inequities.”

The Board of Aldermen’s Public Safety Committee had planned to talk about private policing during a meeting last week, but officials from the city’s Public Safety Department did not show up and the discussion wasn’t held.

Eliminating private policing could potentially roil the city. Luke Reynolds, chair of a taxing district in the city’s Soulard neighborhood that raises about $300,000 a year for private policing, said that if city police officers were barred from working for the private company that patrols his area, the neighborhood would look at other ways to enhance public safety. “I have no idea what that would look like,” he said.

“I have said all along that I don’t necessarily think the system is really necessarily fair. But then again, there is a lot of inequity in the world, unfortunately,” said Reynolds, who owns a bar in Soulard. “We’re going to try to make our neighborhood as safe as we can within the system that exists.”

Don Bellon, who owns a wrecking and salvage business and serves on a board that hires private police in the Grove entertainment district near the city’s central corridor, said paying for policing was necessary “because the city can’t provide it.”

But he said he was frustrated with a lack of accountability for private officers. At a recent Grove board meeting, he questioned what the private officers were doing on a night when several crimes were committed.

“There’s really no oversight on them,” he said. “They’re freelancing. They just decide where to go.”

Charles “Rob” Betts, who owns The City’s Finest, did not respond to a request for comment. Betts has called his company “essentially an extension of the police department” for neighborhoods who want to hire more police. And he has defended giving officers rewards for working on specific cases as not unlike an officer being recognized for good police work at a luncheon.

In reporting on policing in St. Louis this year, ProPublica showed that police and neighborhood advocates have sought court orders to banish individuals from large sections of the city and officers have enforced those mandates through arrests — a practice legal experts said few cities have taken to such extremes. Representatives for the mayor did not respond to requests for comment.

In a partnership with APM Reports this year, ProPublica also found St. Louis had massaged its murder totals in a way that may have violated FBI crime reporting guidelines and created false optimism about police performance. The city quietly lowered its murder counts for 2020 and 2021 by classifying more than three dozen killings as justifiable homicides — deaths not included in the city’s murder count. Neither the department nor representatives for Jones responded to requests for comment for the story.

by Annie Waldman, Aliyya Swaby and Anna Clark, with additional reporting by Nicole Santa Cruz, photography by Kathleen Flynn, special to ProPublica

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

In Amite County, Mississippi, where a third of adults struggle to read, evidence of America’s silent literacy crisis is everywhere.

It’s in a storefront on Main Street, in the fading mill town of Gloster, where 80-year-old Lillie Jackson helps people read their mail. “They can’t comprehend their bills,” she said. “So many of them are ashamed that they haven’t finished grade school.” She longs for the day she can retire, but she doesn’t want to abandon her neighbors. “That’s the only reason I really stay open,” she said.

It’s in the Greentree Lumber mill, where dozens of residents cut Southern yellow pine into boards, but supervisors — who must be able to page through machine guides and safety manuals — are recruited from other counties. “We’re going to have demand for jobs with no people to supply them,” mill accountant Pam Whittington said.

Lillie Jackson helps a customer pay bills from her business on Main Street in Gloster, Mississippi. Greentree Lumber mill in Liberty, Mississippi.

And it’s in the local high school, in a district where a fifth of students drop out, one of the highest rates in the state. Principal Warren Eyster has seen low literacy trickle from one generation to the next — an unusually American phenomenon.

In other wealthy countries, adults with limited education who were born into families with little history of schooling are twice as likely to surpass their parents’ literacy skills. Here, one’s destiny is uniquely entrenched. Though nationwide graduation rates have risen in recent decades, the number of adults who struggle to read remains stubbornly high: 48 million, or 23%.

If there were local programs that could teach adults the reading skills they never got, those parents could help educate their kids and get better jobs, Eyster said. The entire county would benefit: “Our tax base would go up,” he said. But in Amite County, no such program exists.

Amite County High School Principal Warren Eyster believes his community would benefit from an adult education program.

In a nation whose education system is among the most unequal in the industrialized world, where race and geography play an outsize role in determining one’s path to success, many Americans are being failed twice: first, by public schools that lack qualified teachers, resources for students with disabilities and adequate reading instruction; and next, by the backup system intended to catch those failed by the first.

Nearly 60 years ago, the federal government established funding to provide free education for adults who could not read to help them improve their literacy and obtain employment. Presidents John F. Kennedy and Lyndon B. Johnson recognized how low literacy intertwined with poverty and all the ills that came with it. The adult education system they built was supposed to give people everywhere a second chance at success.

States Vary Widely in Funding Adult Education

(Source: Data for state funding came from the 2020-21 <a href=”https://nrs.ed.gov/”>initial federal financial reports</a> through the National Reporting System for Adult Education, as required by the Adult Education and Family Literacy Act, Title II of the Workforce Innovation and Opportunity Act. Data for the eligible number of students by state came from U.S Department of Education estimates of qualifying adults obtained through a records request. The funding data is derived from initial reports and is subject to change. Note: As of Dec. 13, 2022, Kentucky’s <a href=”https://nrs.ed.gov/rt/ky/2020″>initial federal financial report</a> for 2020-21 was not available through the National Reporting System for Adult Education.)

But, ProPublica found, access to this instruction is limited, increasingly insufficient and — much like the nation’s school systems — highly dependent on geography and the political will of elected officials.

The federal government provided roughly $675 million to states for adult education last year, an amount that’s been relatively unchanged for more than two decades when adjusted for inflation. It’s not enough, and states that oversee these programs are required to commit their own share of funding. A review of adult education spending found glaring disparities among states, with some investing more than four times as much as others for each eligible student.

“The magnitude of the need for adult education services has long eclipsed Congressional appropriations,” a U.S. Department of Education spokesperson said in an emailed statement. “Funding levels have not kept pace with the rising cost of service delivery, nor are funding levels commensurate with the millions of people who could benefit from adult education services.”

ProPublica reporters interviewed dozens of students and adult education workers in states that historically have contributed some of the least funding. We found that in some states, programs keep adults on waitlists, unable to meet demand. Some students succeed in these programs, but many drop out within weeks or months, before they are able to make progress. Students often find themselves in overstuffed classes led by uncertified part-time or volunteer teachers.

Resources are scant. An adult education manager at Copiah-Lincoln Community College in Mississippi said she can’t afford enough practice exams. The supervisor of Nevada’s programs, unable to hire enough teachers, worries about having to put students on waitlists. And most programs across the country lack the specialized staff to help adults with learning disabilities that public schools failed to have diagnosed.

In fact, the entire system is set up to prioritize students who can quickly graduate with a high school or work credential, often leaving behind those who need more time to overcome greater reading gaps. Programs that offer more personalized assistance frequently say they can only do so with private support.

Vast swaths of some states are literacy deserts, lacking any government-run adult education classes. This is the case for about a fifth of Mississippi counties, where hundreds of thousands of people live. Students are forced to cross county lines to attend classes or forgo them altogether. “In an ideal world, each county would have a physical location where adult education classes are offered,” said Kell Smith, the interim executive director of the state’s Community College Board, which oversees adult education. “However, due to financial constraints, this is not possible.” (Read the full response here.) Gov. Tate Reeves did not respond to a request for comment.

Many counties that lack programs also double as hot spots of low adult literacy. These are primarily in the mountains of Appalachia, the Southern Black Belt, the Central Valley of California and along the Texas border with Mexico, but they exist throughout the nation. In about 500 American counties, nearly a third of adults struggle to read basic English, according to ProPublica’s analysis of federal literacy data. These adults may have a basic vocabulary and be able to interpret short texts, but their reading comprehension may be limited beyond that.

Hot Spots of Low Literacy Persist Across the Country

(Source: National Center for Education Statistics. Note: The NCES defined adults with low literacy skills as those who tested at or below Level 1, the lowest outcome of its <a href=”https://nces.ed.gov/surveys/piaac/skillsmap/”>national survey</a>, or those who were unable to participate in the survey because of cognitive, physical or language barriers. People with low literacy skills may be able to read a basic vocabulary and decipher short texts, but their reading comprehension abilities are limited.)

In communities with lower literacy, personal challenges magnify into collective crises. In Detroit, for example, former police Chief James Craig recalled how, in their coursework, academy recruits from poorly performing schools had the most trouble with reading. It was harder for them to complete the program, he said, which added to the recruitment challenges faced by the police in Detroit and other cities.

Back in Amite County, Cartina Knox, 50, said she’d jump at the chance to learn what she missed after dropping out of school in ninth grade. But the nearest program is 30 miles away, and she can’t afford a car to get there. “They need places like that out here,” she said.

Standing before a sea of glaring television lights in the packed congressional chamber, President Kennedy exposed an invisible epidemic, reflected in the rates of military rejections, welfare enrollment and incidents of crime.

Millions of Americans were “functionally illiterate,” Kennedy told the nation during his 1962 State of the Union address. In the distinctive clip of his Boston accent, he called for a “massive attack to end this adult illiteracy,” marking a shift from decades of limited and sporadic federal action.

“The economic result of this lack of schooling is often chronic unemployment, dependency or delinquency,” he later told lawmakers. “The twin tragedies of illiteracy and dependency are often passed on from generation to generation.”

President Johnson soon delivered on this call to action, launching the nation’s first federal adult education program as part of his War on Poverty. The goal: Educate Americans whose inability to read or write kept them impoverished and out of the workforce.

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The federal government covered the vast majority of costs for free, state-run adult literacy classes. The funds were initially limited to basic instruction, excluding high school credential programs. As the effort expanded, the government mandated that states recruit adults with the highest literacy needs and urged programs to help with transportation and child care. Buoyed by federal funds, enrollment that started at 38,000 in 1965 soared to a peak of about 4 million by 1996.

But in more recent years, fundamental shifts in the program’s goals and funding impeded its success.

The adult education system began to morph into what is now effectively a credentialing program largely aimed at pumping out students with high-school equivalency or workforce certificates. The federal government started tracking student gains as a way to measure performance. States can use these indicators to determine local funding levels or even eliminate funding to programs not meeting high enough standards. This shift led programs to prioritize more advanced students, often at the expense of those originally envisioned by Kennedy: adults who lacked basic reading skills and needed more help.

“The purpose of these programs is no longer to provide literacy education. That is not what they do anymore,” said Amy Pickard, an assistant professor of education at Indiana University Bloomington.

All the while, as federal funding stagnated, states were called on to put up more money or risk atrophying their programs. National enrollment has careened down to only 700,000 students last year. Despite the country’s immense need, less than 3% of eligible adults receive services.

Jacqueline Davis in front of her home in Memphis. She was kept out of school as a child.

By the time Jacqueline Davis sought reading help, the system was no longer built to serve her. The 62-year-old lives in Shelby County, Tennessee — home to Memphis — where more than a quarter of adults struggle to read. Her father, who was traumatized by a racist assault he experienced as a child, kept her out of school. He read history books to her but didn’t provide any formal instruction. As an adult, Davis stumbled over large words and grammar. Her low reading level made chores out of basic tasks. At the doctor’s office, she had to ask for help filling out intake forms, and she later looked up unfamiliar words in the privacy of her home.

For most of her life, Davis worked as a cashier at places like Popeyes and Kmart, which sometimes required applicants to have a high school credential. She usually lied on the forms so they would hire her, she said. To her knowledge, no one found out. She dreamed of running a small produce business, sustaining herself with what she could grow with some dirt and her own hands. But her inability to fill out hiring or grant paperwork stopped her.

A family portrait taken in the mid-’80s shows Davis, left; her father, Samuel Gathing; and her daughters, Ginger Foster, right, and Mecca Stevenson.

More than a decade ago, Davis signed up for free classes with Messick Adult Center in East Memphis — one of the few in the county at the time. The program, like many across the nation, catered to adults who were close to getting a high school credential, not those who lack basic reading skills like she did. Davis tried to follow the lessons but quickly fell behind. “I just didn’t have the foundation,” she said. “My writing skills are not good, my spelling is not good.”

Her daughter, Mecca Stevenson, recalls watching Davis struggle with homework, too proud to ask her children for help. She only found out her mother had dropped out when the center called their home phone to check on her. Years later, Tennessee shut the center down for failing to graduate enough adults with a high school credential. The state has since worked to improve the quality of instruction in adult education, including providing more training to teachers, according to Jay Baker, the assistant commissioner of adult education.

After she dropped out, Davis kept looking for other options, frustrated by her inability to keep up in a group setting but determined to find something that worked. Several years later, she saw a television advertisement encouraging adults to sign up for classes at the library. She enrolled in a program run by the nonprofit Literacy Mid-South, which provides one-on-one tutoring for adults with a sixth-grade reading level or less. It was exactly what she needed.

Davis reads with her grandsons before they head to school, first image, and fixes the hair of her mother, whom she cares for.

Over five years, her abilities and confidence have risen, as her tutor encouraged her to take apart long words and sound out each letter. She says the program has changed her life. “I’ve learned how to pronounce words and read words that I’ve never seen,” she said.

The difference: Literacy Mid-South is not part of the government’s adult education system, so it has more flexibility to help students at Davis’ level.

While it’s one of the only programs in Memphis offering free tutoring for adults like Davis, it doesn’t get federal or state funding to do so. Adult program coordinator Lee Chase said he hasn’t applied because his program doesn’t work the way those funded by the government do, pushing students to get their high school credentials as quickly as possible. “Our learners choose their goals and we don’t want to limit what those are,” he said.

Lee Chase is the adult program coordinator of Literacy Mid-South, which provides one-on-one tutoring for adults with a sixth-grade reading level or less.

The lack of additional funding has hampered the program’s ability to grow. All tutors are volunteers, and only two employees receive salaries. Applicants often face a monthslong waitlist for a tutor.

“We’re just plugging holes in a lifeboat,” Chase said.

The nation’s approach to adult education has so far failed to connect the massive number of people struggling to read with the programs that could help them. ProPublica reporters heard time and again that in communities stricken with low literacy, programs had to close sites because not enough students had enrolled. Meanwhile, more than two dozen adults in these hot spots told us that a lack of transportation or child care or busy work schedules prohibited them from attending classes. As a result, many have fallen through the cracks.

Steven Binion couldn’t get the kind of help he needed from Detroit’s troubled schools.

For years, Steven Binion wanted to improve his reading level beyond the eighth grade. He didn’t get the one-on-one help he had needed in Detroit’s notoriously troubled schools. Then, he said, after family fights began to escalate, he left home at age 14. Knowing he would have to support himself, he soon dropped out. He survived for years on low-paying jobs: trimming lawns, sorting packages, working at factories. When he had a baby, his worries escalated as he struggled to afford diapers and shoes for his son’s growing feet and couldn’t rent an apartment for his family. He tried several times to attend education programs, but he couldn’t sacrifice the time spent earning a paycheck.

Meanwhile, Mayor Mike Duggan of Detroit was watching this pattern play out at scale. When he was elected in 2013, the city was bankrupt and nearly 1 in 5 adults were unemployed. Adults struggled to read — so many of them, generation after generation, that the city had grown to epitomize the nation’s literacy crisis. While difficult to measure, low literacy estimates for Detroit and its surrounding county have ranged from more than a quarter to nearly half of all adult residents.

The lack of skilled workers stunted the city’s ability to attract industrial investment. Middle-wage jobs all but disappeared. The city struggled to expand its tax base and maintain its public services. “At the time I got elected, the streetlights weren’t on in the city and the ambulances didn’t show up for an hour,” Duggan told ProPublica. “It was pretty much nonfunctional.”

Detroit Mayor Mike Duggan spearheaded a plan to increase the education of the city’s residents.

The mayor realized that to interrupt this cycle, the city needed to better educate its residents. But even with the handful of literacy programs available, not enough adults were attending to make a meaningful difference. Too often, people like Binion couldn’t balance learning with work. While the earlier vision of America’s adult education system prioritized helping students overcome these barriers, many programs today cannot offer this support.

Eric Murrow, at left in the first image, is tutored in math by senior adult education manager Aubrey Williams as he prepares for a GED practice test. Deonte Ruff studies for a GED practice test at St. Vincent and Sarah Fisher Center in Detroit.

Duggan and other city officials came up with an unprecedented plan, one that accounted for the city’s responsibility in creating the crisis. They launched Skills for Life last year; unlike most municipal job programs, it pays participants to go to school. Two days a week, they can improve their reading abilities, prepare for high school credential exams or develop skills like masonry or electrical wiring. The other three days, the city employs participants either in blight remediation, clearing vacant lots or as park ambassadors, tending the city’s green spaces. They’re paid at least $15 an hour — about $5 more than the state minimum wage — for all five days. The city also provides assistance for participants without transportation or child care.

As many as 2,200 residents are expected to participate in Skills for Life over three years; it has up to $75 million in funding committed through 2024.

“The first responsibility of government is to show folks who dropped out because they thought things were hopeless, who didn’t learn to read because they thought there was no value — to show them there is a real and immediate benefit,” Duggan said.

Relying on a temporary stream of pandemic aid dollars, the city pays local adult education programs to run the classes. Detroit is simultaneously addressing some of the root causes of the literacy crisis: With an additional $1.3 billion in federal relief funding, the school district is on its way to dramatically improving facilities and expanding literacy tutoring for children.

While it’s too early to measure the success of the Skills for Life program, the mayor says he is confident that it will prove an integral part of Detroit’s turnaround.

“By the end of 2024, we’re going to be able to show definitively: Yes, you can fundamentally reduce poverty rates, raise literacy rates, raise income,” said Duggan, who believes this could be a model for other communities. “At least so far, we’re feeling very optimistic.”

After searching online, Binion, now 32, came across Skills for Life. Though incredulous that it would provide him with paid time to learn alongside a city job, he showed up an hour early to the interview, he said, and was hired that day.

Binion takes part in Detroit’s Skills for Life program.

Three days a week, he cleared the city’s abandoned lots, and two days a week, he worked with a tutor through the nonprofit St. Vincent and Sarah Fisher Center. The city’s program also set him on a path to earning a certificate in masonry, which will open up dozens of job opportunities. But first, he had to attain his high school credential.

Within months of starting the program, he passed the exam’s science and math sections. But he stumbled on language arts, failing the section twice.

Without the encouragement of his tutors, Binion would have given up. But after several more months of the city paying him to learn, he passed.

One in Five Americans Struggles to Read. We Want to Understand Why.

by Neil Bedi, Sharon Lerner and Kathleen McGrory

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When ProPublica published stories this fall cataloging new evidence that American chemical workers are being exposed to asbestos, readers reacted with surprise over the most simple fact: Asbestos, the killer mineral whose dangers have been known for over a century, is still legal?

Asbestos is only one of many toxic substances that are linked to problems like cancers, genetic mutations and fetal harm and that other countries have banned, but the United States has not. That includes substances like hexabromocyclododecane, a flame retardant used in some building materials that can damage fetal development and disrupt thyroid hormones, and trichloroethylene, a toxic industrial degreaser that has contaminated communities, including a whole neighborhood that suffered a string of tragic pediatric cancer cases.

Michal Freedhoff, the head of chemical regulation at the Environmental Protection Agency, concedes to decades of regulatory inaction. She says a chronic lack of funding and staffing, plus roadblocks created by the Trump administration, have hamstrung the agency in recent years. Still, Freedhoff believes in the regulatory system’s ability to protect the public from dangerous substances and says the EPA is “moving as quickly as we can to put protections into place that have been desperately needed.”

But the flaws of the American chemical regulatory apparatus run deeper than funding or the decisions of the last presidential administration. ProPublica spoke with environmental experts around the world and delved into a half century of legislation, lawsuits, EPA documents, oral histories, chemical databases and global regulatory records to construct a blueprint of a failed system. This is how the U.S. became a global laggard in chemical regulation.

1. The Chemical Industry Helped Write the Toxic Substances Law

The Toxic Substances Control Act authorizes the EPA to ban or restrict the use of chemicals that pose serious health risks. But industry magnates were so intimately involved in the drafting of the original 1976 bill that the EPA’s first assistant administrator for its chemical division joked the law was “written by industry” and should have been named after the DuPont executive who went over the text line by line.

The resulting statute allowed more than 60,000 chemicals to stay on the market without a review of their health risks. It even required the EPA, a public health agency, to always choose regulations that were the “least burdensome” to companies. These two words would doom American chemical regulation for decades.

In 1989, the EPA announced after 10 years and millions of dollars of work that it was banning asbestos. Companies that used asbestos sued the EPA, and in 1991, a federal court ruled that despite all of the work it had done, the EPA did not sufficiently prove that a ban was the least burdensome option. The rule was overturned.

It wasn’t until 2016 that Congress amended the law to cut the “least burdensome” language. The bill was hailed as an extraordinary compromise between health-focused lawmakers and the chemical industry. It created a schedule where a small list of high-priority chemicals would be reviewed every few years; in 2016, the first 10 were selected, including asbestos. The EPA would then have about three years to assess the chemicals and another two years to finalize regulations on them.

(Simon Bailly, special to ProPublica)

Behind the scenes, though, the bill text began not as a reformative measure, but as a company-friendly statute that would help industry avoid some regulations. Many public health advocates and several progressive lawmakers did not support it. Then-Sen. Barbara Boxer, D-Calif., announced at one point that in the metadata of a draft of the bill she had received, the American Chemistry Council, an industry lobbying group, was listed as the document’s originator. “Maybe I am old fashioned,” Boxer said, “but I do not believe that a regulated industry should be so intimately involved in writing a bill that regulates them.” (The ACC and a congressional sponsor of the bill denied her claim.)

Freedhoff, who was previously a lead Senate negotiator for the new chemicals bill, said that when the bill was finally signed into law a year later, it went from being a piece of legislation that was mostly supported by Republicans to one with wide bipartisan support. Both the ACC and health advocacy organizations were at the final signing ceremony, she added.

Some experts point out though, that during the legislative process, the chemical industry prevented the inclusion of some stronger regulations and collected several key wins, including the federal preemption of state-level chemical regulations. In the years before the amendment passed, progressive states like California and Vermont had stopped waiting for the EPA to regulate chemicals and started imposing their own restrictions. Under the new law, federal restrictions would overrule those state-level statutes in certain cases, creating a simpler regulatory structure that was easier for companies to comply with.

2. Following Early Failures, the EPA Lost Its Resolve

When the EPA failed to ban asbestos in 1991, some experts say the agency could have tried again. In the court’s decision, the judge did provide a road map for future bans, which would require the agency to do an analysis of other regulatory options, like import limits or warning labels, to prove they wouldn’t be adequate. “That to me is so telling,” said Eve Gartner, an environmental attorney who worked on the 1991 case and is now a managing attorney at Earthjustice. The EPA “clearly could have taken the steps it needed to ban asbestos in the ’90s.”

But EPA officials froze, believing it would be nearly impossible to prove a chemical should be banned under the “least burdensome” constraints. Many of the most dangerous substances, which faced bans in other countries, remained on the market for decades.

Among them was trichloroethylene, or TCE, a clear, colorless liquid with a sweet odor that resembles chloroform. Its chemical properties make it suited for a number of tasks, and it was used as everything from an anesthetic used during childbirth to a solvent used in the production of decaf coffee to, most commonly, a degreaser for cleaning machinery in factories. But its properties also made it toxic and carcinogenic to humans. Because of the health effects, the Food and Drug Administration banned the use of TCE in medicines, anesthetics and food products in 1977. The European Union placed TCE under its highest level of restriction almost 10 years ago. But the EPA never banned its use in workplaces and industrial factories, including some plants that let TCE leak into the environment.

In 2014, Kari Rhinehart, a nurse from Franklin, Indiana, was at work when she got a call about her daughter, Emma Grace Findley. Doctors had found signs of swelling during the 13-year-old’s annual eye exam and said she needed further testing. She was taken to the same emergency room where Rhinehart worked and prepped for an MRI. When a tech returned to inject more dye, Rhinehart, who held her daughter’s hand as she lay inside the machine, started sobbing silently. She knew that Emma Grace had a brain tumor. It turned out to be glioblastoma multiforme, a rare cancer mostly seen in adults over 50. Only three months after the diagnosis, a week before Christmas, Emma Grace died at home in her mother’s arms.

After WTHR, a local news station, discovered that many children in the community were developing abnormal cancers, Rhinehart learned that sites near her home were polluted with TCE. Even though they had been investigated by EPA, government-ordered tests showed they were still contaminating the air and groundwater. Parents demanded government action. Authorities reopened an investigation and ordered new cleanup efforts, including the replacement of thousands of feet of sewer lines. (Because the causes of most pediatric cancers haven’t been scientifically proven, no direct link has been established between the childhood cancer cases and TCE.)

After the “least burdensome” language was removed from the law in 2016, the EPA named TCE as one of its 10 high-priority chemicals and tried to propose a ban on high-risk uses that year. But the agency under Trump shelved the proposal following industry complaints and decided to reassess the risk of the chemical. Then, in 2021, the Biden EPA restarted the effort after finding that the previous administration had ignored ways the public could be exposed to chemicals like TCE. “It would have been a disservice to the people that we are charged with protecting” to not take the time to fix those issues before moving forward, said Freedhoff.

In July, the agency published a draft version of a new assessment, which found that 52 of 54 uses of TCE present an unreasonable risk to human health. The EPA still needs to finalize that assessment before it can start the yearslong process of writing a regulation.

Asked about the delays, Rhinehart said, “How does the EPA say with a straight face their job is to protect human health?”

3. Chemicals Are Considered Innocent Until Proven Guilty

For decades, the EU and the United States followed the same “risk-based” approach to regulation, which puts the burden on government officials to prove that a chemical poses unreasonable health risks before restricting it. The process can take years while evidence of public harm continues to mount.

(Simon Bailly, special to ProPublica)

In 2007, the EU switched to a more “hazard-based” approach, which puts the burden on chemical companies to prove that their products are safe when evidence shows a chemical can cause significant harm like cancer or reproductive damage. Named REACH (Registration, Evaluation, Authorisation and Restriction of Chemicals), the new system started by requiring the registration of every chemical that is imported or manufactured at a volume of more than 1 metric ton annually. Under a “no data, no market” policy, companies would be required to submit toxicological studies on those chemicals. And if those studies or other scientific research showed that a chemical could significantly harm human health, it could be prioritized for regulation.

Some experts say REACH isn’t perfect and there are ways for companies to subvert science or mislead regulators. For example, because the EU receives large amounts of information on thousands of chemicals, companies have been able to submit improper data or conduct inadequate testing without their actions being noticed for some time.

Nonetheless, the new system has fundamentally changed regulation in Europe. Under this approach, the EU has successfully banned or restricted more than a thousand chemicals.

While the Europeans discussed a hazard-based approach, the United States Congress was doing the same. Then-Sen. Frank Lautenberg, a New Jersey Democrat, introduced the Kid Safe Chemicals Act in 2005, which would require companies to reassess the safety of their chemicals every three years. The bill also required the EPA to assess 300 chemicals by 2010, and thousands more by 2020. Lobbyists and industry-friendly lawmakers were quick to fight back. They argued that this approach would ruin innovation in the United States and only a risk-based one was acceptable.

“Over and over again, we’ve seen this fail,” said Anna Lennquist, a senior toxicologist at ChemSec, an international nonprofit that works on chemical safety. “For the most harmful substances, the only way to ensure there is no risk from them is to ban them. That’s one main difference between the U.S. and EU.”

Neither the 2005 bill nor similar efforts over the years gained traction. Lautenberg died in 2013 before any reform passed in Congress. The 2016 law, a bill that maintained the risk-based approach with some improvements, was named after him.

Experts say a risk-based reform was likely the only type that could have passed in the U.S. legislature. The chemical industry has spent millions of dollars lobbying lawmakers to support its fight against stronger restrictions. The ACC alone has been one of the top lobbying organizations in the country in recent years.

Asked if the EPA needed a new stronger law to better regulate chemicals, Freedhoff said no and argued that the 2016 law “hasn’t been given half of a chance to succeed” because of a lack of funding and resources.

4. The EPA Mostly Regulates Chemicals One by One

Six years after the reform led the EPA to create a priority system to keep chemical regulations moving, the agency is behind on all such rules. So far, it has only proposed one ban, on asbestos, and the agency told ProPublica it would still be almost a year before that is finalized. In June, Freedhoff testified to the Senate Environment and Public Works committee: “I think we can all recognize that the law is not yet working as everyone had hoped.” Speaking about the chemicals the agency selected in 2016 to be a priority, Freedhoff admitted that, without additional resources, the EPA would “not get more than a handful of those rules on the books before 2025 or beyond.”

The 10 Top-Priority Chemicals Pending Regulation
The first batch of chemicals chosen by the EPA for regulatory review, along with the agency’s latest actions on each one. The final rules are due between 2022 and early 2023, and the agency has said it will be late on all of them.
Asbestos
BAN PROPOSED IN APRIL 2022
Primarily used by the chemical industry as part of chlorine production. Some asbestos-containing products like vehicle brake blocks are also imported in small quantities.
Asbestos can cause a number of cancers, including the aggressive cancer mesothelioma, and other health problems like asbestosis, which scars the lungs.
1-Bromopropane
DRAFT RISK EVALUATION ISSUED IN JULY 2022
Used in degreasers, spot cleaners for dry cleaning, spray adhesives and automobile-care products.
It can be toxic to human development and can increase a person’s chance of developing cancer.
Carbon Tetrachloride
DRAFT RISK EVALUATION ISSUED IN AUG. 2022
A raw material for producing refrigerants, agricultural products and other chemicals in industrial and laboratory settings.
Health risks include possible damage to or cancer in the liver, and cancer of the adrenal gland or brain.
C.I. Pigment Violet 29 (PV29)
FINAL RISK EVALUATION ISSUED IN SEPT. 2022
Used in paints, coatings, plastics and rubber products in the automobile industry and in industrial carpeting and commercial printing. The coloring is also used in some consumer watercolors and paints.
The pigment can damage the lungs by increasing the number of cells there, a condition called alveolar hyperplasia.
Cyclic Aliphatic Bromide Cluster (HBCD)
FINAL RISK EVALUATION ISSUED IN JUNE 2022
A flame retardant used in insulation and other building materials. It also shows up inside some pastes, recycled plastics and automobile parts.
Known to cause reproductive damage and developmental effects, and to disrupt the operation of the thyroid.
1,4-Dioxane
FINAL RISK EVALUATION ISSUED IN DEC. 2020
Used in the production of other chemicals, as a laboratory chemical, and in some adhesives and sealants.
Exposure can lead to vertigo, drowsiness and headaches. The chemical may also damage organs like the liver and kidneys.
Methylene Chloride
FINAL RISK EVALUATION ISSUED IN NOV. 2022
An ingredient in products like paint strippers, adhesives and degreasers.
It can cause suffocation, coma and death. It has also been linked to neurotoxicity, damage to the liver, and cancer.
N-Methylpyrrolidone (NMP)
DRAFT RISK EVALUATION ISSUED IN JULY 2022
A solvent used in some paint strippers, adhesives and lubricants, and in industrial products used for cleaning metals, textiles and plastics.
NMP can damage the reproductive system and affect fetal development.
Perchloroethylene
DRAFT RISK EVALUATION ISSUED IN JUNE 2022
Mostly used in industrial settings as a metal degreaser. It’s also used in dry cleaning.
The colorless liquid can damage the nervous system and has been linked to cancer.
Trichloroethylene (TCE)
DRAFT RISK EVALUATION ISSUED IN JULY 2022
An organic chemical used mostly in industrial settings as a metal degreaser. It is also an ingredient in some cleaning, furniture-care and automotive-care products.
It can damage the immune system, cause reproductive and developmental effects, and damage the heart, lungs, kidney and liver. It is also a carcinogen.
Source: EPA

Freedhoff told ProPublica the delays are not caused by a lack of commitment and the agency’s entire staff is working to “make sure that people are protected from these dangers.” But she pointed out that the chemical division’s workload increased exponentially in 2016, and funding has mostly remained flat since then. “The fundamental truth is [the Toxic Substances law] has existed in its current form for almost six and a half years now and we still have the budget of the old broken law,” she said. In the EPA’s 2023 budget request, it asked for an additional $63 million and 200 new employees to better handle the workload.

A key reason the system is moving so slowly is that the law requires that every chemical go through a yearslong process, and the underfunded EPA division must face industry resistance for each one. “The whole regulatory process is designed to be slow and to be slowed down by those opposed to regulation,” said Joel Tickner, a professor of environmental health at University of Massachusetts, Lowell and a leading expert on chemical policy. “Frankly, unless EPA doubled their size, they can’t do much with the resources they have.”

Chemical company representatives and industry groups like the ACC have challenged the risk evaluations for many of the first 10 chemicals labeled as high priority. The organizations have submitted lengthy public comments accusing the EPA of conducting unscientific assessments and asked for extended time frames that further delayed regulation. When the EPA updated some risk assessments from the Trump administration to include risks from air and water exposure for chemicals like TCE, the industry groups were quick to challenge the agency with a 34-page rebuttal, accusing it of not following the letter of the law.

The industry has also vehemently argued against a full asbestos ban. Trade groups like the ACC insisted that workers were protected from the dangers of asbestos. Industry-friendly scientists wrote papers accusing the EPA of overestimating the substance’s dangers. And 12 Republican attorneys general wrote to the head of the agency questioning the EPA’s legal authority to pursue the ban.

Even when the EPA used its new authority under the 2016 law to have companies conduct toxicology tests of 11 prioritized chemicals, some industry organizations sued the agency in an attempt to invalidate the orders. One trade group sued over testing of 1,1,2-trichloroethane, a possible human carcinogen that is released in huge quantities by plants all across Louisiana’s “Cancer Alley.” In its complaint, the group argued the order was “arbitrary, capricious, an abuse of discretion, and otherwise not in accordance with the law.” The lawsuit is still ongoing. The testing for all of these chemicals was originally due to be done in December 2021. So far, testing has been completed on only one of the 11 chemicals.

“The conveyor belt is sort of stopping,” said Robert Sussman, an attorney who served as a deputy administrator for the EPA during the Clinton administration. “The sobering reality is that [the Toxic Substances Control Act] was supposed to change that with the new law, but now when you take a step back, that was maybe unrealistic to expect.”

Meanwhile, the EU has authored a new plan to regulate chemicals even faster by targeting large groups of dangerous substances that can cause cancers, genetic mutations, endocrine damage, immune system damage and more. If it’s enacted, it would lead to bans of another 5,000 chemicals by 2030, according to the European Environmental Bureau, a nongovernmental organization.

5. The EPA Employs Industry-Friendly Scientists as Regulators

The EPA has a long history of hiring scientists and top officials from the companies they are supposed to regulate, allowing industry to sway the agency’s science from the inside.

For example, in 2010, the agency worked with a panel of scientists to evaluate the risks of hexavalent chromium, the chemical featured in the movie “Erin Brockovich.” But the Center for Public Integrity found that several scientists on that panel had actually defended PG&E, the company that poisoned a community with the substance. Some of those scientists disagreed with this characterization and one said he had gone through the EPA’s conflict-of-interest vetting. In 2017, the EPA hired a new top official at its chemical division who had been an executive at the ACC for five years. The New York Times found that she helped direct much of the Trump administration’s decisions to deregulate chemicals.

And then there’s Todd Stedeford. A lawyer and toxicologist, Stedeford has been hired by the EPA on three separate occasions. During his two most recent periods of employment at the agency — from 2011 to 2017 and from 2019 to 2021 — he was hired from corporate employers who use or manufacture chemicals the EPA regulates.

Before 2011, Stedeford worked for Albemarle Corp., which was among the largest makers of flame retardants in the world. The chemicals, which are added to furniture, electronics and other products to help prevent fires, have been associated with neurological harm, hormone disruption, and cancers. A 2012 investigation by the Chicago Tribune revealed that Albemarle and two other large manufacturers founded, funded and controlled a front group that deceived the public about the safety and effectiveness of flame retardants used in furniture. Albemarle argued its products were safe, effective and extensively evaluated by government agencies. When Stedeford left the job defending flame retardants, he went on to head the EPA program that assessed the risks of chemicals including those same flame retardants, the Tribune reported. In response, Stedeford told ProPublica that he had recused himself from work on flame retardants when he joined the agency.

(Simon Bailly, special to ProPublica)

Then Stedeford left the EPA in 2017 and went to work for Japan Tobacco International, where he defended the company’s “novel tobacco products,” such as vape pens and e-cigarettes. When he returned to the EPA in 2019, Stedeford became involved in a scientific project with a former Japan Tobacco colleague that looked into how to evaluate the dangers of chemicals in e-cigarettes. Stedeford said that he was hired to advance “new approach methodologies” at the agency and that the project fell under that purview and there was nothing wrong with that.

Some close watchers of the agency say people like Stedeford epitomize the EPA’s revolving-door problem. “He represents the sense that industry science is the best science, which is very much in line with regulators deferring to industry-funded studies showing there isn’t cause for concern,” said Alissa Cordner, an academic who wrote the book “Toxic Safety: Flame Retardants, Chemical Controversies, and Environmental Health.”

In response, Freedhoff said she didn’t believe her current staff was “corrupt, or unduly responsive to industry” and that she has seen “the dedication and the commitment and the passion that the career staff here feel for the work that they’ve been charged with doing.” She declined to comment on Stedeford, who was last hired by the previous administration.

When he was hired again in 2019, Stedeford was in a pivotal position to influence how the new chemical regulation law would be implemented. Whistleblowers have accused Stedeford of changing the findings of health assessments of new chemicals that were being evaluated before being allowed on the market, minimizing and sometimes deleting hazards listed in the documents, according to The Intercept. The EPA’s Office of Inspector General is now investigating those claims. Stedeford declined to comment on the accusations.

During this stint at the EPA, Stedeford was also tasked with leading an effort to update the agency’s approach to assessing polymers, chemicals that make up the vast majority of plastics. Polymers can cause “lung overload,” a condition in which tiny particles accumulate in the lungs, potentially causing chronic lung diseases. The EPA had Stedeford work with companies that make these chemicals on a paper about lung toxicity and, in October 2020, Stedeford proposed a new policy based on their unpublished research.

The change was set to affect how dozens of new plastics were assessed, increasing the amount of the polymers that it was considered safe to inhale, according to a complaint submitted by EPA scientists who opposed the policy. (Stedeford told ProPublica that he disagreed with those scientists and that he had told agency staffers they didn’t need to use the new approach if they felt it was inappropriate in a particular case.) After the complaint was filed, the agency withdrew the policy.

Stedeford left the EPA again in 2021 to work for a law firm that represents chemical companies. Emails obtained by ProPublica show he continued to work with agency staff on the paper about lung overload. Stedeford said “there’s nothing untoward about that” because he had “contributed scholarship” to the paper while at the agency. The EPA said “employees that worked on this paper did so with the full knowledge and support of their management at the time the work was occurring. Other co-authors on the paper include scientific experts from industry and NGOs.”

Do You Work With These Hazardous Chemicals? Tell Us About It.

by Andy Kroll, ProPublica, and Andrew Perez and Aditi Ramaswami, The Lever

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

Flush with money after receiving the largest-known political advocacy donation in U.S. history, conservative activist Leonard Leo and his associates are spending millions of dollars to influence some of the Supreme Court’s most consequential recent cases, newly released tax documents obtained by ProPublica and The Lever show.

The documents detail how Leo, who helped build the Supreme Court’s conservative majority as an adviser to President Donald Trump, has used a sprawling network of opaque nonprofits to fund groups advocating for ending affirmative action, rolling back anti-discrimination protections and allowing state legislatures unreviewable oversight of federal elections.

The records also show that the Leo-aligned nonprofits paid millions of dollars to for-profit entities connected to Leo.

Leo and one of his top associates did not respond to requests for comment.

The money flowed mostly through so-called dark money groups, which don’t have to disclose their donors. They are required to reveal the recipients of their spending in their annual tax returns, which are released to the public, but often those are also dark money groups or other entities that have minimal disclosure rules.

As ProPublica and The Lever detailed in August, Leo was gifted a $1.6 billion fortune last year by a reclusive manufacturing magnate, Barre Seid. The newly revealed tax documents cover last year, just as Leo was in the process of receiving that enormous donation.

The Supreme Court case involving a Colorado-based website designer who refuses to work for same-sex couples provides a window into Leo’s strategy.

At least six groups funded by Leo’s network have filed briefs supporting the suit, which seeks to overturn Colorado’s anti-discrimination law. The Ethics and Public Policy Center, which records show received $1.9 million from Leo’s network, submitted a brief supporting the web designer. So did Concerned Women for America, which has received at least $565,000 over the past two years from the Leo network, as well as an organization called the Becket Fund, which got $550,000 from a Leo group.

Leo’s network has also been the top funder of the Republican Attorneys General Association, or RAGA, which spends money to elect GOP attorneys general and serves as a policy hub for the state officials. Twenty Republican attorneys general have also filed a brief in support of the case. One Leo group donated $6.5 million to RAGA during the 2022 election cycle, according to the association’s federal filings.

The largest donation by Leo’s network was $71 million given to DonorsTrust, a so-called donor-advised fund that pools money from numerous funders and gives it out to largely conservative and libertarian groups. Past reports have described DonorsTrust as a “dark-money ATM” of the conservative movement.

Another case that Leo groups have sought to influence is Moore v. Harper, which could have sweeping implications for American democracy. The question posed in the case is whether the Constitution affords state legislatures the power to create rules for federal elections without state court oversight or intervention.

The Honest Elections Project, an initiative within another key Leo organization, the 85 Fund, has backed the plaintiff’s case with an amicus brief. The tax documents show that the 85 Fund also donated $400,000 in 2020 to the Public Interest Legal Foundation, an Indianapolis-based conservative legal group that filed a supportive brief in the case.

Thirteen Republican attorneys general filed a brief backing the suit as well.

The Supreme Court is also hearing two cases this term brought by the conservative group Students for Fair Admissions that are challenging universities’ affirmative action policies. The group received $250,000 from the 85 Fund in 2020, the tax records show, more than a third of the total it raised that year.

Speech First, which the records show received $700,000 in 2020-21 from the 85 Fund, filed briefs backing Students for Fair Admissions in both cases. Republican attorneys general, backed by Leo’s network, submitted briefs, too.

The other theme to emerge from the new tax records is the large amount of expenditures going to for-profit entities run by or connected to Leo. The 85 Fund’s largest outside vendor for 2021 was CRC Advisors, a for-profit consulting firm chaired by Leo. The 85 Fund paid CRC Advisors $22 million last year, tax records show.

The largest outside vendor to the Concord Fund, another hub in Leo’s network, was also CRC Advisors, which received nearly $8 million over the course of a year. Concord also paid $500,000 to BH Group, another for-profit firm led by Leo.

There is no prohibition on nonprofits sending business to companies they have connections to, but any deals must be made at a fair market value.

The companies did not immediately respond to questions about the payments.

Help ProPublica Investigate Threats to U.S. Democracy

by Seth Freed Wessler

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

Nobody working to bring a $346 million Microsoft project to rural Virginia expected to find graves in the woods. But in a cluster of yucca plants and cedar that needed to be cleared, surveyors happened upon a cemetery. The largest of the stones bore the name Stephen Moseley, “died December 3, 1930,” in a layer of cracking plaster. Another stone, in near perfect condition and engraved with a branch on the top, belonged to Stephen’s toddler son, Fred, who died in 1906.

“This is not as bad as it sounds,” an engineering consultant wrote in March 2014 to Microsoft and to an official in Mecklenburg County, Virginia, who was helping clear hurdles for the project — an expansion of a massive data center. “We should be able to relocate these graves.”

Mecklenburg County, along with Microsoft and a pair of consulting firms, immediately began a campaign to downplay the cemetery’s significance. Their most urgent task was to make sure the cemetery wouldn’t be deemed eligible for the National Register of Historic Places, the federal government’s list of sites worthy of protection. That designation would likely trigger an archaeological investigation overseen by the state and could force the developers to steer clear of the graves. Without such a designation, the graveyard could be moved with relative ease.

After the discovery of the cemetery, the county and its consultants turned to archaeologists, which federal law required they retain. But that didn’t go as they hoped. In a detailed report, the archaeologists determined that the cemetery “is eligible for inclusion” on the historic registry. The report stressed the cemetery’s significance to African American life and death in Southside Virginia, citing the fact that Stephen Moseley and his relatives were Black. “It is recommended that the area be avoided,” the report said.

To the county and its consultants, whose costs Microsoft covered, this was unacceptable. “We will challenge his recommendation,” wrote Alexis Jones, a consultant with a firm called Enviro-Utilities.

The firm and the county pressed the archaeologists to reverse their conclusion that the cemetery belongs on the National Register. And they asked the team to cast doubt on the central finding that made the cemetery historically significant: that all the people buried there — members of a community of landowners who farmed tobacco in the wake of the Civil War and Reconstruction — were Black.

The archaeologists would only comply with the latter request. They edited their report to say, “It cannot be ruled out that the burials are associated with white tenant farmers.” But when they sent Jones and her boss the revised report, they acknowledged that the new assertion was dubious: “All the evidence available at this stage suggests” the cemetery was the final resting place of an African American community, they wrote.

Asked about the addition of the white tenant farmer claim, one of the archaeologists, David Dutton, told ProPublica: “We hadn’t exhumed any bodies. We hadn’t done any DNA. We hadn’t done any analysis. So could we say 100%? I mean, look, this is archaeology, you don’t know until you actually know.”

Jones and her colleagues still wanted the eligibility for the historic registry designation nixed, so they sent the report to another archaeologist, seeking a second opinion. But the archaeologist didn’t go along, and in fact he rejected the notion that some of the people buried there might be white. “Jim Crow would not have had whites and blacks buried that closely together,” he wrote.

He suggested that the original firm conduct additional historical research. “More work needs to be done on Moseley family members to identify who’s in the graves,” he wrote in an email to Jones’ boss, who forwarded it to the county.

The county and its consultants ignored the advice.

What the county had to do, because Virginia law requires it, was run a legal notice tucked among the ads and classifieds in several weekly print editions of The Mecklenburg Sun. Even that, Jones had warned in an email to Microsoft and the county, would “risk” the “chance of a local family member coming forward.”

The second week the notice ran, in November of 2014, the paper published a front-page story about a controversy over new helmets for the high school football team following the death of a player from blunt force trauma. It appeared under the byline Mike Moseley. Moseley is a staff writer. He is also Stephen Moseley’s great-grandson.

“The Moseleys have been here a long time,” Mike Moseley said of his family’s roots in that part of Virginia.

When asked if he’d seen the notice in the pages of his own newspaper, he responded: “Do you read the classifieds and the ads? I do not.”

Mike Moseley would not have been hard to locate, had the county actually tried to find Stephen Moseley’s descendants. The tall, lanky 60-year-old went to high school in Mecklenburg County and played basketball on the school team. After high school, he moved away for a time — he wasn’t interested in following his father into the funeral home business — but he returned to Mecklenburg more than two decades ago. Since then, he’s worked a series of jobs at local papers, including at the Sun, where he is still a reporter.

“Everyone who works for the county knows me,” he said. “They know who we are. It’s hard to understand how they didn’t come talk to us.”

Mike and David Moseley

(Christopher Smith, special to ProPublica)

Mecklenburg County did not reply to detailed questions about the handling of the cemetery and the contents of the emails, which were obtained through state open records requests. But in a phone interview, County Administrator Wayne Carter said that the newspaper notice was sufficient to comply with the law. He added that he asked some people who hunted on the land if they’d noticed anyone visiting the cemetery. “They had not seen anyone down there,” Carter said.

Jones, the consultant, declined to answer questions, referring them to Microsoft. Enviro-Utilities did not respond to emailed questions and multiple calls and text messages. In response to questions, a Microsoft spokesperson said, “the County followed all applicable federal, state and local laws.”

Like his nephew, David Moseley heard nothing from the county about the threat to the cemetery. The soft-spoken retired schoolteacher and administrator, who is now 85, grew up on the land adjacent to where Microsoft was building its data center and currently lives outside of Lynchburg, Virginia. “Yes,” he said, when asked in August about his relatives’ resting place, “there’s a cemetery there.” He did not at first believe that the remains of his grandfather, Stephen Moseley, were somewhere else. “Somebody would have called me if they moved the cemetery,” he said.

Plaques and a handle found during the archaeological excavation of the Moseley family cemetery

(Obtained by ProPublica through a public records request)

In the months after the notice that ran in The Mecklenburg Sun, workers kept finding graves, ultimately 37 of them. Some of the plots were marked with pieces of quartz or with yucca plants, which were used by many Southern Black families who could not afford stones. Each burial site added days to the excavation, to the frustration of the county and its consultants. A crew dug up each of the graves, collecting bones, casket fragments, metal handles and hinges, etched epitaph plaques, a pair of eyeglasses, an ivory comb. The remains and other items were packed in plastic crates and stored in an office. Months later, all of it was reburied in four tightly packed, $500 cemetery plots one town to the north.

David Moseley’s grandparents, Stephen and Lucy Moseley, and great-grandparents, James and Ellen Walker, in 1899 purchased 169 acres in a fertile region near the North Carolina border. His father, Douglas Moseley, inherited the Moseley homestead, and as a teenager, David woke in the early mornings to work with an uncle harvesting their tobacco crop. As far back as David knew, his ancestors had been buried on that land. In one of his earliest memories, from when he was about 4, he joined his parents in the graveyard to bury his stillborn sibling. “I remember being out there and the open grave,” he said.

David, along with his last living sister, Christine Moseley, and their children, nieces and nephews, still own the eastern 83 acres of the property, which they call “the farm.” The family sold the adjacent tract, which Microsoft now owns, generations ago; David said his family entered a handshake agreement with the white people who bought the other half of the property that allowed the Moseleys to continue to visit the graves. Today, the farm is surrounded on nearly every side by land zoned for industrial use, including three of the 17 parcels that Microsoft has acquired in Mecklenburg County for the ongoing expansion of its data center there. Every so often, David Moseley or his niece who lives outside Washington, D.C., gets an offer to buy their remaining land. Sometimes the correspondence is signed by Wayne Carter, the county administrator who oversaw the permitting process for the Microsoft data center.

“If they can find us to buy the land,” David said, as he sat at his dining room table, beside a stack of papers about the family property, “why couldn’t they find us for the cemetery?”

The relocated gravestone of Fred D. Moseley, who died in 1906 at the age of 2

(Christopher Smith, special to ProPublica)

The cemetery’s disappearance proceeded despite layers of federal and state regulations nominally intended to protect places like it and to facilitate consultation with people who might have an interest in what happens to historic sites.

But in Virginia, as in most of the country, the power over what ultimately happens to these sites often belongs to whoever owns the land. And the labor of investigating what could make the site historic is often outsourced to for-profit archaeological firms working for property owners who have a financial stake in finding as little as possible.

“We are among the only developed countries in the world that considers archaeological sites on private property to be private property themselves rather than cultural heritage,” said Fred McGhee, Ph.D., an African American archaeologist in an overwhelmingly white field.

“Black historic places are some of the first to get maligned,” he said.

African American cemeteries that are deemed abandoned or untended have routinely been treated as little more than a nuisance in the path to development. Historic preservation laws and regulations rarely protect them.

On the campus of the University of Georgia, builders discovered a cemetery of enslaved people, and in 2017 the remains were reportedly loaded onto a moving truck and reburied “in secret,” according to a faculty review. In Texas in 2018, the graveyard of dozens of men held as convict laborers, a site whose significance was long known to community members, was found by construction workers, and the remains were exhumed. In each case, the developers have said they treated the burials with dignity.

Earlier this year, an agricultural company called Greenfield LLC applied for a federal permit to build a Statue of Liberty-sized grain transfer facility on 248 acres along the Mississippi River in Louisiana. An archaeological firm had initially concluded that the development put several notable Black historic sites, including a restored plantation that serves as a memorial to enslaved people, in harm’s way. But in May, ProPublica revealed that the firm changed its report to back away from that conclusion after facing pressure from its client. The firm told ProPublica at the time that no one had forced it to make the revisions and that the report itself was a draft, noting that drafts often change “after clients review them.”

Without first consulting the communities that live beside the development site and trace their ancestry to the people enslaved on the same land, the Army Corps of Engineers, the agency considering the permit, allowed Greenfield to drive enormous metal beams into a sugar cane field — even before the Corps signed off on the project. That field, researchers and community members say, likely holds unmarked graves of people who were held as slaves. Greenfield has said that it considers the protection of historic sites a priority and that it would stop construction if any such sites were discovered.

For decades, the Army Corps has been criticized by other federal agencies, advocates and community and tribal organizations for failing to engage with affected groups about potential damage to cultural sites, as the 1966 National Historic Preservation Act requires.

“The way this is supposed to work is that the Army Corps, or whatever federal agency is issuing a permit, should have told the developers that the descendant community needs to be identified and interviewed and that their perspectives need to be taken into account,” said J.W. Joseph, an archaeologist with New South Associates, a cultural resources firm in Georgia that has done archaeological work in dozens of cemeteries, often as part of projects regulated by the federal law.
“Far too often, that doesn’t really happen.”

In Mecklenburg County, before Microsoft took possession of the land — for free, with significant tax breaks, along with state development dollars earmarked for struggling tobacco farming regions — the Army Corps raised no concerns about the development’s compliance with the Preservation Act. Nor did the Virginia Department of Historic Resources, the agency tasked with enforcing state and federal preservation laws, make any effort to step in and protect the site. (The department said it has never denied a landowner application for a reburial permit and preservation experts said Virginia judges almost never do either.)

The Army Corps and the Department of Historic Resources facilitated the cemetery’s legal erasure. The graves were dug up in near silence.

“Although the Department’s position is that those laid to rest should be left undisturbed,” a Department of Historic Resources spokesperson said, “we also understand that this is not always possible.”

Once they had permission from the state Department of Historic Resources to excavate the remains, Microsoft, Mecklenburg County and its consultants showed little concern for anything other than speed and cost. It was a rainy spring in 2015, and the ground was soaked. The graves that an excavation crew dug open would sometimes fill with water. According to one crew member, Eric Mai, who had recently started a master’s program in archaeology, the already-fragile remains were further degraded — exposed, sometimes for days, to the wet muck.

Everyone knew it was the wrong time for the work. “The conditions on site are about as bad as they can be for exhumation,” Jones, the consultant, wrote to Microsoft and the county, explaining why the dig was taking longer than expected. “It’s a nasty sticky wet clay,” she said of the soil that had primed the land decades ago for prolific tobacco yields. But Jones pressed the gas. “THEY need [to] find additional help and work 7 days a week until it is done.”

The “remains were saturated and in very poor condition,” according to a report by the firm hired to do the excavation, Circa-Cultural Resource Management LLC. The Department of Historic Resources agreed with Circa that there wasn’t enough physical matter left to justify sending the bones to the Radford University forensic anthropologist they’d planned to hire to study markers of age, race and sex. It “would probably not add any new information to the record,” a Circa report said.

“WAYNE, this is a GOOD thing!” Jones, the consultant, wrote to Carter, the county administrator. “This would be a huge money and time savings for us.” (This year, Jones took a job with Microsoft, as an environmental permitting program manager, according to her LinkedIn profile.)

Mai said in an interview that he worried that in the rush to dig up the Moseley cemetery, the Circa team may have missed important artifacts and grave offerings. “I think it would probably be concerning for descendants to learn that the people out there doing the work, me included, did not really know what we were looking at,” said Mai. “Nobody on the team knew anything about African American burials.”

Circa CEO Carol Tyrer wrote in response to questions that the team members did have “knowledge of African American cemeteries and burial practices.” Tyrer referred other questions about the Moseley cemetery excavation to Microsoft.

In part because of his ethical concerns, Mai left the field of for-profit archaeological and historic survey work. “There is a disrespect in this process,” Mai said recently. “The people, the descendants, are not really part of what we do.”

Had the county or any of its consultants made more of an effort to determine who they were digging up, they might have learned from public death certificates and census records that in one of the graves lay the remains of Ellen Walker and likely her husband, James Walker, the parents of Lucy Walker, who married Stephen Moseley, a preacher’s son from one county away. They might also have found living relatives like Mary Taylor, who is now 83 and is one of Stephen and Lucy Moseley’s many great-grandchildren. She lives in Norfolk and keeps a worn folder full of records showing that one of her mother’s brothers was buried in the Moseley cemetery. They might have come upon the records of other cousins and aunts and uncles by marriage, who formed their own branches of the family tree, whose descendants still own other plots of land in Mecklenburg County, and who appear to have been laid to rest there, too.

In the final weeks of the dig, Microsoft began pushing harder, flying a drone over the Circa workers to monitor their progress. “There will be no hiding place!” a Microsoft project manager wrote in an email as crews prepared to cut down the trees still standing in a ring around the cemetery.

Microsoft flew a drone over the grave excavation site and took photos of its location in the middle of a ring of trees.

(Obtained by ProPublica through a public records request)

Once the dig was complete, the Army Corps told Mecklenburg County that it had met its obligations under federal law. Construction crews leveled the ground where the cemetery had been. Ownership of the land was transferred from the county to Microsoft.

In response to questions, the Corps wrote that it had consulted with the Department of Historic Resources and with Mecklenburg County before issuing the permit. A spokesperson also stated that the Corps had posted a notice on its own website around the same time the county ran its notice in the Sun “soliciting comments on the project.” Nobody responded.

Aerial photos of Mecklenburg County going back to the 1990s show rows of evergreen trees that wind across both of the old Moseley plots like the whorls and arches of a thumbprint. Then, in a 2016 satellite image of the terrain, the contours of trees and their center point have disappeared. A row of rectangles, the backfilled graves, appear in the tan earth. By 2020, an aerial view shows only an undeveloped dirt patch on the far eastern edge of the Microsoft site, just over the line from the land the Moseleys still own.

“Because the cemetery has been relocated from its original location,” the final archaeological record on file with the state said, “it is no longer eligible for listing on the National Register of Historic Places.”

The portion of the Microsoft data center that was built where the Moseley cemetery used to be

(Christopher Smith, special to ProPublica)

In 2019, four years after the Moseley cemetery was dug up, Mecklenburg County began building a sorely needed new middle and high school. On the uncleared land, surveyors discovered a cluster of headstones inscribed with the last name Tunstall, a white family with a long history in the region. The graves would need to be moved for construction to proceed as planned, and the school board put a notice in the newspaper, like the one that had been placed about the Moseley cemetery. But in this case, the relocation was also discussed in open school board meetings. A construction firm that worked on the project trumpeted its effort to help find relatives.

A Mecklenburg County sheriff’s deputy named Dustyne Lett saw the news of the cemetery on Facebook. She is a descendant of the Tunstalls.

“By us being involved, we could have a say about where they would be moved,” Lett said recently.

A county judge issued an order giving the school board permission to disinter the remains. They were reburied in a family cemetery several towns away.

“Family members need to be buried with family members,” Lett said. “It’s not like they get together to have dinner. But for us living people, we want to have one spot where we can visit them, talk to them.”

David and Mike Moseley do not imagine that they would have won a fight against Microsoft or the county to keep the cemetery where it was, though they would have wanted the chance to wage one. They also were denied the chance to decide where their ancestors would be reburied.

“We would have wanted them to be moved here, where the rest of the family is,” David Moseley told me when we met in the Jerusalem Temple United Holy Church Cemetery, where the Moseleys have buried their relatives since the 1960s, after they moved off the farm. David’s sister Dorothy Tolbert, who passed away in New Jersey in May, is buried there, not far from Lucy Moseley’s grave — a grave that had been publicly logged online three years before the Microsoft project. “That would have been respectful, that would have allowed them to be together,” David said. In 1967, when Lucy Moseley died at the age of 96, relatives figured moving her husband’s grave to the Jerusalem Temple cemetery would have been too expensive. They would let their ancestors rest in peace.

At least, David Moseley said, Microsoft or the county could have placed a sign or historical marker on the land where the cemetery had been, noting the names of everyone who’d been buried in the old graveyard.

Mike and David Moseley visit the cemetery where the family chose to bury many of its members in recent decades. If they’d known that the old family cemetery was being relocated, they would have asked to rebury the remains at this church, they said.

(Christopher Smith, special to ProPublica)

State and local officials have actively worked to honor and preserve white cemeteries in Mecklenburg County. In a 2003 book about the successful effort to have several historic town centers listed on the National Register of Historic Places, the view from a white cemetery is described as “bucolic.” That view has been protected by a Virginia historic preservation easement. Another cemetery, with only three visible stones, is noted for its impressive gateposts, which are inscribed with the words “Love Makes Memorial Eternal” and which were donated in 1941 by the United Daughters of the Confederacy.

In August, I met David and Mike Moseley to look for their relatives’ reburied graves in a cemetery in Chase City, 15 minutes north of the Microsoft data center. The final excavation report had said there would be a marker placed “indicating how many remains, where they were removed from, date, and known family names.”

We drove slowly through the cemetery, looking for a sign. We did not find one. Over lunch at a local restaurant, we called the Chase City municipal office. A clerk told us that she thought she knew what we were talking about; in the new section of the town cemetery, past the mausoleum, we’d find “the graves the county sent.”

“There are no names. It just says ‘assorted bones,'” she said, reading off a paper on file in the town office. She gave us directions, listing the names on several other stones in the vicinity of the reburial plots.

Past the mausoleum, we spotted a grave with one of those names and stopped the car. David peered out the window. “I know that stone,” he said quietly. “It’s been a long time since I’ve seen it.”

Stephen Moseley’s gravestone had been set in the ground. Six feet to the right stood the stone of his toddler son, Fred D. Moseley. There is nothing noting the existence of any other remains, just an unmarked stretch of grass.

David and Mike Moseley placed their hands on the top of Stephen’s gravestone. “I would not have known where he was buried,” Mike Moseley said, repeatedly, and then sat down in front of the stone, his hand still resting on the top, and cried. Being here with them now, he said, “this connects us.”

(Christopher Smith, special to ProPublica)

Mollie Simon contributed research.

by Mick Dumke

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

It was called the Plan for Transformation, the most ambitious public housing makeover in U.S. history.

Under the plan, launched in 2000, the Chicago Housing Authority would demolish most of the city’s public housing developments, displacing thousands of families. Then, over the next 10 years, the agency would replace or repair 25,000 units of housing while bringing new investment to low-income communities.

More than two decades later, the CHA used just a few sentences in an obscure report to declare that the “revitalization” of 25,000 housing units — the plan’s central promise — was complete.

“CHA has achieved the goal of this activity,” the agency informed the U.S. Department of Housing and Urban Development in March.

But the agency’s claim hides a fundamental failure to meet its original commitments.

The agency padded its unit count by including types of housing and assistance that weren’t in the original plan, an analysis by ProPublica found. The questionable units add up to more than a fifth of the 25,000 total.

At the same time, the CHA has fallen short of providing the family housing it promised, leaving it with less than half the family units it once had.

In claiming to meet its overall unit goal, the CHA also sidesteps the fact that it is nowhere close to fulfilling its obligations to build homes and redevelop communities where its high-rises once stood. Agency officials told ProPublica they remain committed to those goals but can’t provide a timetable on when they’ll achieve them.

Community leaders, local politicians and families seeking homes have been frustrated by the CHA’s delays and unfulfilled promises. The criticism grew in recent months after ProPublica reported on the agency’s plans to turn over prime vacant land to a soccer team owned by a billionaire supporter of Chicago Mayor Lori Lightfoot. ProPublica also revealed how HUD has allowed CHA to sell, lease and give away parcels of land it says it no longer needs, even though its redevelopment work is far from done.

David Moore, a former agency official who is now alderman of the 17th Ward on the South Side, said HUD needs to pressure the CHA to finish redeveloping its former public housing communities. He said the growing number of homeless encampments around the city is tied to the agency’s slow pace of housing construction.

“We should be building more public housing units so people have options,” Moore said.

In a written statement, a CHA spokesperson said the agency remains committed to its mission of providing housing and “building strong communities.” The statement did not mention the Plan for Transformation.

“CHA’s investments today go beyond replacing the failed public housing model of the past,” the statement said. By partnering with developers, nonprofits and other government entities, “CHA will continue to leverage all available tools to accelerate the pace of new mixed-use, mixed-income development projects to ensure that more subsidized and affordable homes are available to people in need.”

The CHA’s claim to have revitalized 25,000 units is misleading in several ways, ProPublica’s analysis found.

For starters, the math doesn’t add up, the analysis found. The agency boosted the numbers by including apartments that aren’t finished yet or had no direct connection to the public housing communities the CHA promised to redevelop.

For example, the CHA has counted more than 5,000 privately owned units that it subsidizes through what are called project-based vouchers. But unlike public housing, these vouchers aren’t necessarily permanent: They keep the units affordable for a set amount of time, usually five to 30 years. The Plan for Transformation made no mention of replacing permanent public housing with project-based vouchers.

And more than a third of these same voucher units were designated as affordable housing years before the plan was launched or before the CHA subsidized them.

That’s true of the Major Jenkins Apartments, a privately owned, 156-unit building in the Uptown neighborhood on the North Side. Built in the 1920s, the building was fixed up to provide apartments for homeless and other low-income people in 1995, five years before the Plan for Transformation. That’s also when the CHA began subsidizing half the units with project-based vouchers.

The Major Jenkins Apartments in Chicago’s Uptown neighborhood were fixed up to provide housing for homeless and other low-income people in 1995.

(Carlos Javier Ortiz, special to ProPublica)

Yet in 2010, the agency began counting those apartments toward its 25,000-unit goal. That happened after the CHA argued to HUD that it should be allowed to count project-based vouchers toward its Plan for Transformation total. The vouchers offered “more opportunity to provide affordable units” and options in neighborhoods long resistant to affordable housing, the CHA told HUD. Agreeing that the vouchers would be “beneficial,” a HUD official signed off.

None of the project-based vouchers should be included in the Plan for Transformation tally, Moore said.

“It’s a skirt around,” he said. “If they’re claiming those, they need to build more units. And HUD should be holding them accountable.”

The CHA’s claim also ignores the sites where the city’s major public housing complexes once stood. Most of the locations still have stretches of empty land.

Two decades ago, while displacing thousands of residents and razing most of its large developments, the agency promised to rebuild the sites with new homes for people with a range of incomes. At least a third of these would be sold at market value. But the agency also agreed in court to reserve thousands of units as public housing, and former residents were guaranteed a right to return.

Since then, the CHA has been slow to build the new homes. It’s now sitting on blocks of vacant, undeveloped land on every side of the city.

The CHA’s largest development, the Robert Taylor Homes, once stretched along 2 miles of South State Street. Under the Plan for Transformation, all 28 Taylor high-rises were razed — a loss of more than 4,400 apartments altogether.

The Robert Taylor Homes in 1988

(Archival photo by Camilo Vergara)

Eventually the CHA proposed replacing them with a new development, Legends South, that included about 2,400 total units, a quarter of them reserved for CHA residents. So far the agency has finished 335 of the public housing units, while more than 25 acres at the Taylor site remain vacant and “not prioritized” for redevelopment, according to a city planning document.

The CHA is also required to build hundreds of additional public housing units at the Lathrop Homes, on the North Side; the Ickes Homes, now renamed Southbridge, on the South Side; and the ABLA Homes, now known as Roosevelt Square, on the West Side. The CHA has offered to lease 23 acres at the ABLA site to the Chicago Fire soccer team, which is owned by billionaire Joe Mansueto, an ally of the mayor’s.

“You have not done your work at bringing back all of the units under the Plan for Transformation,” said Etta Davis, a housing activist and vice president of the residents’ group at the Dearborn Homes on the South Side.

She noted that more than 44,000 people are on the CHA’s public housing waiting list: “So you’re way behind in the market in what’s needed.”

CHA officials said they remain committed to redeveloping Lathrop, Ickes, ABLA and other sites. More than 500 new homes are under construction, including 83 public housing units and 238 supported by project-based vouchers, and others are on the way, they said.

There’s another way the CHA’s 25,000-unit count fails to deliver what the Plan for Transformation promised: It includes far less housing designated for families.

The Past 20 Years Have Seen a Drop in CHA Units, Especially Apartments for Families

(Sources: Plan for Transformation, CHA records. Note: “Supportive” includes housing for people who are disabled or homeless, veterans, and others.)

At the time the plan was launched, the CHA had about 29,000 units for families. The plan pledged to replace or rehab 15,000 of them.

But even if project-based voucher units are included, the CHA now has about 13,000 units for families — 2,000 fewer than the plan envisioned. That means the CHA lost 16,000 homes for families over the last 22 years.

Adella Bass, a mother of three who’s been on the agency’s waiting list for 13 years, sees the CHA falling short.

“Everybody deserves a place to live — a clean place to live, a suitable place to live,” Bass said. But apartments have grown so expensive that many families are concluding “there’s just no hope for housing in Chicago.”

Bass serves as a home-aide caretaker for her mother while working on her college degree. Several years ago, after struggling to pay bills, she moved into a North Side homeless shelter with her kids and her boyfriend, now her husband.

Eventually they were able to find a subsidized apartment on the South Side, which she’s grateful for. But she said it’s infested with mice and mold, and she would like something better. Bass is still hoping the CHA will call, and her long-term goal is to get into a program that leads to homeownership.

Adella Bass said she’s been on a waiting list for housing for 13 years.

(Carlos Javier Ortiz, special to ProPublica)

Bass noted that the CHA is sitting on empty land and unoccupied apartments — more than 1,200 as of earlier this year, records show. “All of their steps, protocols, procedures, just their way of doing things needs a complete and total transformation,” she said.

The Plan for Transformation was not intended to replace all of the city’s public housing.

At its peak, the CHA had more than 42,000 units. But in 1995, citing mismanagement, HUD took direct control over the CHA. The agency then began emptying and tearing down thousands of its apartments, leaving it with just under 39,000 citywide. About a third of those units were vacant or occupied by people without a lease, which would have a significant impact on the Plan for Transformation.

In the mid-1990s, for instance, the Robert Taylor Homes included more than 4,400 units stretching over 2 miles on the South Side. By 1999, the development was down to 3,800 units, only 1,600 of them occupied by leaseholders.

Theresa Boler lived at the Taylor Homes in the late 1990s and recalled the CHA picking up the pace of evictions. “They were putting people out for any little reason,” she said.

When the word spread that the CHA planned to tear the high-rises down, many residents were scared and angry. “They’d never lived outside the projects,” she said. “They really had no place to go.”

Theresa Boler, a former resident of the Robert Taylor Homes, now lives in a Chicago Housing Authority senior building.

(Carlos Javier Ortiz, special to ProPublica)

In 1999, HUD agreed to return control of the CHA to a board and leaders selected by Chicago’s mayor, Richard M. Daley. As part of the deal, federal and local officials worked together on a new set of goals for the agency. Decades of inadequate funding and poor maintenance had left many of the CHA’s buildings so rundown that they would cost billions of dollars to fix up. The Plan for Transformation mapped out how the CHA would dismantle most of its aging developments and replace them with mixed-income communities.

The plan’s goal of 25,000 units was based on the number that were leased to tenants at the end of 1999, after the agency had already emptied thousands of apartments.

The plan acknowledged that thousands of family units would be lost in the transition. “There is no alternative,” the plan stated.

The CHA can claim some successes over the last two decades. The agency has used project-based vouchers and other partnerships to help provide almost 1,800 apartments to disabled people, veterans and others struggling with homelessness or mental illness. Many of these residents live in the units with their families, the agency says. The CHA has also expanded its options for seniors.

Over the last 20 years, the Chicago Housing Authority has subsidized apartments around the city for veterans, disabled people and low-income families, including 30 units in this building on the Northwest Side.

(Carlos Javier Ortiz, special to ProPublica)

The CHA said it serves more total households than it did 20 years ago, largely through the expanded use of vouchers to subsidize rent in privately owned apartments. But rents continue to climb, and the city is struggling with a shortage of affordable housing. In addition to the list for public housing units, 35,000 people are waiting for a voucher. The number would be even higher if the CHA hadn’t closed the list.

Boler now lives in the Lincoln Perry Annex, a CHA senior building. She’s also a member of the Kenwood-Oakland Community Organization, a neighborhood group that has pressed the CHA to build more replacement housing. She said the need is greater than ever.

“We’re not stopping,” she said. “You can’t just take things from us.”

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by Ava Kofman

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Less than three weeks after ProPublica and the New Yorker published an exposé of hospice fraud, members of Congress have called on the Department of Health and Human Services to “immediately investigate this situation.”

In a letter sent Friday to the Centers for Medicare and Medicaid Services and the Office of Inspector General, the bipartisan leaders of the Comprehensive Care Caucus wrote that “Medicare fraud cannot be tolerated, especially when it is being perpetrated on our nation’s most vulnerable patients.”

The ProPublica-New Yorker investigation described how the lucrative design of the Medicare benefit incentivizes many profit-seeking hospices to cut corners on care and target patients who are not actually dying. It chronicled the lack of regulation and the frustrated efforts of whistleblowers to hold end-of-life care conglomerates accountable. And it drew on state and federal data to reveal how, in the absence of oversight, the number of for-profit hospice providers in California, Texas, Arizona and Nevada has lately exploded.

The letter’s signatories — Sen. John Barrasso, R-Wyo., Sen. Jacky Rosen, D-Nev., Sen. Deb Fischer, R-Neb., and Sen. Tammy Baldwin, D-Wis. — decried the “troubling trend” spotlighted by the reporting and requested a briefing from the agencies within two weeks about plans to “address the proliferation of fraudulent hospice providers.”

The story’s findings are also being cited by lawmakers and lobbyists in New York, where Gov. Kathy Hochul is considering signing legislation to outlaw the creation of new for-profit hospice providers in the state. At the moment, all but two of New York’s 41 hospices are nonprofit. Assemblyman Richard Gottfried introduced a bill, which passed this summer, to keep things that way. “We can close the barn door before the horses have gotten out,” he said. “The article raised the level of awareness around issues with for-profit care.”

Published last month, the investigation provoked what industry leaders have called a “much-needed” conversation on how Americans die — along with demands to improve those deaths. “The abuses detailed in the article call for a reform of the Medicare hospice benefit that can reduce the opportunities for fraud and abuse,” the National Partnership for Healthcare and Hospice Innovation, a group for nonprofits, said in a statement. In public letters, LeadingAge, another association for nonprofit providers, and the American Academy of Hospice and Palliative Medicine, an organization for hospice professionals, separately emphasized that “change is needed.”

Lobbying groups whose members include for-profit providers — the National Hospice and Palliative Care Organization and the National Association for Home Care & Hospice — took issue with the investigation’s focus on “bad actors” but said in a joint statement that its members look forward to working with lawmakers “to implement solutions to address the isolated problems highlighted by the article without jeopardizing access to the Medicare hospice benefit.”

Dr. Ira Byock, a palliative care physician, author and former president of the American Academy of Hospice and Palliative Medicine, echoed the calls for greater monitoring of the hospice system in the wake of the investigation. “Hospice in America is gravely ill,” Dr. Byock wrote in an op-ed published last week by STAT, the health care news site. “I am hopeful that the article will spark a long-overdue internal reckoning by the field — my field — and the industry we gave rise to.”

Hospice began more than 60 years ago as a countercultural charity movement to help patients die with comfort, support and as little pain as possible. After the 1980s, when President Ronald Reagan authorized Medicare to cover the service, dying became a big business. In 2000, less than a third of all hospices were for-profit. Today, more than 70% are. Between 2011 and 2019, the number of hospices owned by private equity firms tripled. For profit-seeking providers, hospice is lucrative: Medicare pays a fixed rate per patient a day, regardless of how much help is offered. The aggregate Medicare margins of for-profit providers hover around 20% compared with just 5% for nonprofits.

Studies have found that for-profit hospices are more likely than their nonprofit counterparts to have less skilled staff, reduced clinical services and fewer home visits in the last days of life. Their patients have longer stays and leave hospice alive at higher rates. Last year, citing the research, three members of the Senate Finance Committee requested information on the quality of hospice services provided by Kindred at Home, the country’s largest home care chain. (Kindred’s hospice subsidiary was recently spun-off and sold to a private equity firm.) “We are concerned that when applied to hospice care, the private equity model of generating profit on a rapid turnaround can occur at the expense of dying patients and their families,” they wrote. Analysis of the data is ongoing, senate staffers said.

Assemblyman Gottfried said that the pending legislation in New York is an attempt to prevent the profiteering that’s unfolded elsewhere from seizing his home state. Jeanne Chirico, who heads the Hospice and Palliative Care Association of New York State, said that her group regularly fields calls from venture capitalists looking to break into the market. So do her members. Mary Crosby, the CEO of East End Hospice, a nonprofit located on Long Island, said that once or twice a month investors make offers. “We’re a particularly attractive acquisition target because we struggle financially and we’re not linked to a larger health care system,” Crosby told me. “But if you’re actually providing the kind of interdisciplinary care that is based on the original hospice mission, as we are right now, you’re not going to be making a lot of money.” Her hospice covers around 20% of its operating costs from donations, she said.

New York would not be the first state to bear down on its hospice sector. California has enacted a temporary ban on new hospice licenses, after the Los Angeles Times uncovered a dramatic increase in hospices that far outpaced the demand for services. In a report released this spring, state auditors found that since 2015 the Department of Public Health had never suspended a hospice license and had revoked a license only once. “The state’s weak controls have created the opportunity for large-scale fraud and abuse,” they said.

ProPublica and the New Yorker’s reporting outlined how California’s pattern of disproportionate growth is spreading to other states. In Arizona, Nevada and Texas, the rise in new Medicare-approved hospices since 2018 now accounts for around half of all hospices in each state. Unlike New York, these states don’t have “certificate of need” requirements for hospices, which means there’s no strict limit to the number of providers that can open in a given area.

The simplest way to understand the recent hospice boom is to see it.

Rapid Rise in Hospices Concentrated in West and Southwest
A ProPublica analysis of Medicare data reveals a sharp uptick in providers since 2018.

(Source: <a href=”https://data.cms.gov/provider-data/topics/hospice-care”>CMS data set of Medicare-certified hospices.</a> Chart by Lena Groeger.)

This chart represents Medicare hospices — it does not include the dizzying rise in state licenses — and therefore undercounts the total explosion in end-of-life care providers. (Hospices must first obtain a state license before they can be certified to bill Medicare for their services.) Federal data, for instance, shows just 22 Medicare-certified hospices packed into a building on Friar Street in Los Angeles, but California’s data reveals an additional 107 state hospice licenses registered at the same address. (Although California’s moratorium bars new providers, it does not stop the thousand-plus owners already in possession of state licenses from obtaining Medicare certification and billing the government.)

Industry leaders have expressed alarm about the loopholes in the state and federal certification process that enable sudden clusters of for-profit providers to materialize. A ProPublica review of hospice data in Phoenix showed that a raft of new entities shared the same addresses and network of owners. Some of the Arizona entrepreneurs already operate several hospices in Los Angeles, including out of the building on Friar Street. “These small entities aren’t required to publicly report quality of care data, are often not audited and, because of how the per diem is set up, it’s a gold mine,” said Larry Atkins, the chief policy officer of the National Partnership for Healthcare and Hospice Innovation. “You could very quickly figure out whether a hospice is a real place or a mill that’s simply signing up and burning through patients to bill Medicare. But no one is really doing that.”

Eric Rubenstein, who worked as a special agent at the Department of Health and Human Services’ Office of Inspector General until 2019, said that the Centers for Medicare and Medicaid Services and its contractors are often focused on auditing bigger billers. For the “smaller circuses and clowns,” the government’s lax payment system can be easy to exploit. “The demand for these licenses is predicated on the fact that there’s a huge amount of money to be made quickly in hospice fraud,” he said.

CMS said in a statement to ProPublica that the agency “is aware of the increase in the number of new hospices” requesting Medicare certification, and is “working to ensure they meet all applicable requirements for participation in the Medicare program.”

Last month, four national hospice associations banded together to ask CMS to enact targeted moratoriums in high-growth regions. “In addition to action at the state level, increased federal oversight is needed to protect hospice patients and their families,” they wrote. The groups are currently scheduling a meeting with CMS to discuss their concerns.

by Mike Reicher and Lulu Ramadan, The Seattle Times

This article was produced for ProPublica’s Local Reporting Network in partnership with The Seattle Times. Sign up for Dispatches to get stories like this one as soon as they are published.

Washington state education officials are proposing to expand oversight of private schools for students with disabilities, citing a Seattle Times and ProPublica investigation that revealed that the state failed to intervene despite years of complaints about these schools.

The state Office of Superintendent of Public Instruction’s request for new legislation, which will likely include a budget increase, appears to be welcomed by some lawmakers frustrated with the private special education schools, called “nonpublic agencies,” which accept public school children and tax dollars.

In its monthly special education bulletin, OSPI announced last week it was working on legislation that would expand the agency’s power over the specialty schools. The OSPI bulletin said the Seattle Times and ProPublica reports “show us that more changes are needed” in the system.

The news organizations found OSPI failed to address problems at the largest chain of such schools, the Northwest School of Innovative Learning, despite complaints from parents, school district administrators and others. Allegations against the school, dating back to at least 2014, included unqualified aides struggling with a lack of curriculum, misuse of isolation rooms to manage student behavior and a staffer who repeatedly choked students.

Northwest SOIL is owned by a subsidiary of Universal Health Services, one of the nation’s largest health care corporations. The school accepts only public funds for tuition and took in more than $38 million in taxpayer funds over the five school years ending in 2021.

State Rep. Gerry Pollet, D-Seattle, said publicly funded private schools should be held to higher standards, including requirements for curriculum, certified staffing and special education teacher-to-student ratios.

“I think the reporting showed that they’re operating in their own legal black hole and that is not acceptable,” he said. “We need to have very clear requirements and consequences for nonpublic agencies.”

A representative from the school’s parent company said it had no comment in response to the state’s proposal. Previously, the company defended its program in a statement to the news organizations, writing that it takes students’ complex needs seriously. It denied that Northwest SOIL understaffed campuses and said its hiring practices ensure that “only appropriate and qualified candidates are hired.”

Public school districts across Washington outsource a small but very high-needs segment of their special education population — about 500 students a year — to Northwest SOIL and about 60 other schools. These programs promise tailored therapy and instruction and, in the case of Northwest SOIL, can receive more than $68,000 per child.

While short on specifics, the state education department’s bulletin offered a glimpse into the behind-the-scenes efforts to improve special education ahead of this legislative session, which begins Jan. 9 and lasts 105 days.

The OSPI proposal seeks to improve the agency’s complaint investigations and monitoring of the private schools. It would also create new application and renewal requirements for programs seeking to contract with school districts and instruct the schools to collect student data and report it directly to the state.

Suzie Hanson, the executive director of the Washington Federation of Independent Schools, said private school educators are open to reporting restraint and isolation data and complaints directly to state officials. But it may require collaboration among multiple state agencies, she said. Though all nonpublic agencies are approved by OSPI, some are approved as private schools by the State Board of Education. Others, such as Northwest SOIL, are run by hospitals, which report to the Department of Health.

“I think together we can come up with legislation that would strengthen the communication and care for students with disabilities,” Hanson said. (Northwest SOIL is not a member of the trade group.)

The Seattle Times and ProPublica investigation, detailed in two stories published in the past three weeks, exposed a critical gap in the state’s oversight of such schools. Currently, the system places responsibility for monitoring the private schools not on the state but on individual school districts.

But that arrangement doesn’t address systemic issues at Northwest SOIL or other schools like it. More than 40 districts at a time send students to Northwest SOIL’s three campuses, and each district only receives information about its own students, so no single school district or agency has a complete picture of what’s going on there.

“I think the nonpublic agencies should be directly supervised by the OSPI, that there should be reporting directly to the OSPI and that OSPI should have authority to shut down and close schools based on their own observations and investigations,” said Mary Griffin, a special education attorney at the Northwest Justice Project, which provides legal services to low-income families.

OSPI already has the authority to revoke a nonpublic agency’s status, but the state has been reluctant to act, saying school districts are better positioned to spot and correct problems. Griffin said any new legislation should clearly spell out that OSPI has the duty to investigate problems and force changes at nonpublic agencies.

California law, for instance, requires the state Department of Education to visit and regularly monitor its specialty schools and to investigate if it receives evidence of “a significant deficiency in the quality of educational services” or if there is “substantial reason to believe that there is an immediate danger to the health, safety, or welfare of a child.”

The Times and ProPublica also reported that, unlike some other states, Washington requires just one special education teacher per nonpublic agency school, even though they serve some of the state’s highest-needs students.

Pollet, the state representative, is also spearheading a bill that would overhaul the state’s special education funding model, which has long been a source of contention in Washington state. Currently, the state funds special education services for up to 13.5% of a school district’s student population, regardless of how many students are eligible for services. It leaves school districts to pay the remainder of those education costs — or deny services to students, Pollet said.

The request would cost about $972 million between 2023 and 2025, according to OSPI, which recommended removing the 13.5% cap.

The Times and ProPublica series coincided with efforts by OSPI and advocates to curtail the misuse of restraint and isolation in both public and private schools. The American Civil Liberties Union of Washington and Disability Rights Washington, another advocacy group, have been working on a report examining how restraint and isolation is used disproportionately on students of color, disabled students and others from marginalized communities, said Kendrick Washington, policy director at the ACLU of Washington. The groups’ report is expected early next year.

Lawmakers, educators and advocates have been exploring alternatives to isolation and considering banning the practice in the state, Washington said.

An OSPI advisory committee has also been crafting recommendations on changes to restraint and isolation policy. Its report is set to be published later this month.

Sarah Snyder, who complained to state officials after her son Christopher was restrained and isolated at Northwest SOIL in 2017, said she was “cautiously optimistic” about OSPI’s request, noting that parents deserve more transparency from the schools.

“If there’s a problem, we need to know about it,” said Snyder, of Puyallup. “It makes me super happy that they’re finally taking action, but I hope they follow through.”

by Marilyn W. Thompson

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

In a victory for public health advocates, a federal judge in Montana has blocked the state from implementing a law that would make it illegal for hospitals to ask employees if they are vaccinated. The measure, which passed last year, was the country’s most extreme anti-vaccination law.

Health care providers in Montana had sued the state over the law, arguing that it violates constitutional protections for disabled Americans. On Friday, U.S. District Judge Donald W. Molloy agreed with them. His ruling permanently enjoined the state from implementing its law in any health care facility.

ProPublica recently investigated the passage of the law, known as House Bill 702, and detailed how a hospital just a short walk from the state Capitol soon faced horrific choices amid COVID-19’s delta wave.

Montana’s GOP-controlled Legislature had passed the bill as debate raged in the state about government efforts to control the spread of COVID-19. The legislation made it illegal for hospitals and doctor’s offices to require vaccinations of any kind. It also prohibited them from reassigning employees based on vaccination status.

The legislation covered not just COVID-19 vaccines but any vaccines, including childhood immunizations for mumps, measles and rubella.

The bill’s author, Republican Rep. Jennifer Carlson, told ProPublica in an interview this year that the legislation was an important privacy protection. “Believing that individuals have the right to make their own private medical decisions is not the same thing as being ‘anti’ anything,” Carlson had said.

The Montana Medical Association and other groups challenged the legislation in a federal lawsuit, and Molloy issued a preliminary injunction in March.

During hearings on the case, immunocompromised patients testified about how routine medical visits had put them at high risk because health facilities could not ensure basic protections.

The judge’s final decision “ensures that Montanans can obtain safe, quality health care without arbitrary government interference,” said Raph Graybill, lead counsel for the Montana Nurses Association, a plaintiff in the case.

The office of Montana Attorney General Austin Knudsen, which defended the bill as a human rights protection, told local media that it will consider appealing the decision. Knudsen’s office did not respond to ProPublica’s request for comment.

At least a dozen states have placed limits on vaccine mandates, according to tracking from the Kaiser Family Foundation. Meanwhile, the National Conference of State Legislatures identified hundreds of bills introduced in the last two years aimed at prohibiting COVID-19 vaccine mandates, though few have succeeded.

In ProPublica’s story, administrators and staff at St. Peter’s Health in Helena described their terror as patients, many of them unvaccinated, flooded the facility and clogged its small intensive care unit. Deaths reached record highs in October 2021 while the hospital was operating under “crisis standards of care,” a legal distinction that warns patients they cannot expect usual levels of treatment.

Hospital staff who served on its Scarce Resources Committee recounted a dramatic episode when the panel had to decide which of a handful of critically ill patients would get an ICU bed.

St. Peter’s told ProPublica that no COVID-19 patient went without treatment.

St. Peter’s administrators struggled to get staff vaccinated, and Carlson’s bill added to widespread uncertainty about how to best protect the public. Most health care facilities in Montana rely heavily on payments from federal agencies and have been under pressure to comply with vaccine mandates from the Biden administration that conflicted with the state law.

Vicky Byrd, CEO of the nurses association, said the federal ruling means that acute care facilities will be better able to protect their patients. “It was and is the right thing to do,” she told ProPublica.

Mollie Simon contributed research.