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by Adriana Gallardo, Anna Clark and Mariam Elba

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

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.

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by Jennifer Smith Richards, Chicago Tribune, and Jodi S. Cohen, ProPublica

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

On the last street before leaving Jacksonville, there’s a dark brick one-story building that the locals know as the school for “bad” kids. It’s actually a tiny public school for children with disabilities. It sits across the street from farmland and is 2 miles from the Illinois city’s police department, which makes for a short trip when the school calls 911.

Administrators at the Garrison School call the police to report student misbehavior every other school day, on average. And because staff members regularly press charges against the children — some as young as 9 — officers have arrested students more than 100 times in the last five school years, an investigation by the Chicago Tribune and ProPublica found. That is an astounding number given that Garrison, the only school that is part of the Four Rivers Special Education District, has fewer than 65 students in most years.

No other school district — not just in Illinois, but in the entire country — had a higher student arrest rate than Four Rivers the last time data was collected nationwide. That school year, 2017-18, more than half of all Garrison students were arrested.

Officers typically handcuff students and take them to the police station, where they are fingerprinted, photographed and placed in a holding room. For at least a decade, the local newspaper has included the arrests in its daily police blotter for all to see.

((Jacksonville Journal-Courier))

The students enrolled each year at Garrison have severe emotional or behavioral disabilities that kept them from succeeding at previous schools. Some also have been diagnosed with autism, ADHD or other disorders. Many have experienced horrifying trauma, including sexual abuse, the death of parents and incarceration of family members, according to interviews with families and school employees.

Getting arrested for behavior at school is not inevitable for students with such challenges. There are about 60 similar public special education schools across Illinois, but none comes anywhere close to Garrison in their number of student arrests, the investigation found.

The ProPublica-Tribune investigation — built on hundreds of school reports and police records, as well as dozens of interviews with employees, students and parents — reveals how a public school intended to be a therapeutic option for students with severe emotional disabilities has instead subjected many of them to the justice system.

It is “just backwards if you are sending kids to a therapeutic day school and then locking them up. That is not what therapeutic day schools are for,” said Jessica Gingold, an attorney in the special education clinic at Equip for Equality, the state’s federally appointed watchdog for people with disabilities.

Doors lead to classrooms at the Garrison School, a public special education school for students with severe emotional or behavioral disabilities. (Armando L. Sanchez/Chicago Tribune)

“If the school exists for young people who need support, to think of them as delinquents is basically the worst you could do. It’s counter to what should be happening,” Gingold said.

Because of the difficulties the students face in regulating their emotions, these specialized schools are tasked with recognizing what triggers their behavior, teaching calming strategies and reinforcing good behavior. But Garrison doesn’t even offer students the type of help many traditional schools have: a curriculum known as social emotional learning that is aimed at teaching students how to develop social skills, manage their emotions and show empathy toward others.

Tracey Fair, director of the Four Rivers Special Education District, said it is the only public school in this part of west central Illinois for students with severe behavioral disabilities, and there are few options for private placement. School workers deal with challenging behavior from Garrison students every day, she said.

Tracey Fair, director of the Four Rivers Special Education District, which runs the Garrison School, speaks at a November meeting of the district’s board. (Armando L. Sanchez/Chicago Tribune)

“There are consequences to their behavior and this behavior would not be tolerated anywhere else in the community,” Fair said in written answers to reporters’ questions.

Fair, who has overseen Four Rivers since July 2020, said Garrison administrators call police only when students are being physically aggressive or in response to “ongoing” misbehavior. But records detail multiple instances when staff called police because students were being disobedient: spraying water, punching a desk or damaging a filing cabinet, for example.

“The students were still not calming down, so police arrested them,” wrote Fair, speaking on behalf of the district and the school.

This year, the Tribune and ProPublica have been exposing the consequences for students when their schools use police as disciplinarians. The investigation “The Price Kids Pay” uncovered the practice of Illinois schools working with local law enforcement to ticket students for minor misbehavior. Reporters documented nearly 12,000 tickets in dozens of school districts, and state officials moved quickly to denounce the practice.

This latest investigation further reveals the harm to children when schools abdicate student discipline to police. Arrested students miss time in the classroom and get entangled in the justice system. They come to view adults as hostile and school as prison-like, a place where they regularly are confined to classrooms when the school is “on restriction” because of police presence.

A “Police Incident Report” form used by the Garrison School details a student’s behavior and arrest. (Obtained by ProPublica and Chicago Tribune; identifying information removed by the school.)

U.S. Department of Education and Illinois officials have reminded educators in recent months that if school officials fail to consider whether a student’s behavior is related to their disability, they risk running afoul of federal law.

But unlike some other states, Illinois does not require schools to report student arrest data to the state or direct its education department to monitor police involvement in school incidents. Legislative efforts to do so have stalled over the past few years.

In response to questions from reporters about Garrison, Illinois Superintendent of Education Carmen Ayala said the frequent arrests there were “concerning.” An Illinois State Board of Education spokesperson said a state team visited the school this month to examine “potential violations” raised through ProPublica and Tribune reporting.

The team confirmed an overreliance on police and, as a result, the state will provide training and other professional development, spokesperson Jackie Matthews said.

“It is not illegal to call the police, but there are tactics and strategies to use to keep it from getting to that point,” Matthews said.

Ayala said educators cannot ignore their responsibility to help students work through behavioral issues.

“Involving the police in any student issue can escalate the situation and lead to criminal justice involvement, so calling the police should be a last resort,” she said in a written statement.

In 2018, Jacksonville police arrested a student named Christian just a few weeks into his first year at Garrison, when he was 12 years old. His “disruptive” behavior earlier in the day — he had knocked on doors and bounced a ball in the hallway — had led to a warning: “One more thing” and he would be arrested, a school report said. He then removed items from an aide’s desk and was “being disrespectful,” so police were summoned. They took him into custody for disorderly conduct.

Christian has attention-deficit/hyperactivity disorder, post-traumatic stress disorder and oppositional defiant disorder. Now 16, he has been arrested at Garrison several more times and was sent to a detention center after at least one of the arrests, he and his mother said.

He stopped going to school in October; his mother said it’s heartbreaking that he’s not in class, but at Garrison, “it’s more hectic than productive. He’s more in trouble than learning anything.”

“If they call the police on you, you are going to jail,” Christian told reporters. “It is not just one coming to get you. It will be two or three of them. They handcuff you and walk you out, right out the door.”

Handcuffs and Holding Rooms

Just over an hour into the school day on Nov. 15, two police cars rushed into the Garrison school parking lot and stopped outside the front doors. Three more squad cars pulled in behind them but quickly moved on.

Principal Denise Waggener had called the Jacksonville police to report that a 14-year-old student had been spitting at staff members. When police arrived, one of the officers recognized the boy, because he had driven him to school that morning. The student had missed the bus and called police for help, according to a police report and 911 call.

School staff had placed the boy in one of Garrison’s small cinder-block seclusion rooms for “misbehavior,” police records show. A school worker told the officer she had been standing in the doorway of the seclusion room when the boy spit and it landed on her face, glasses and shirt.

“He Spit in the Staff’s Face” Denise Waggener, the Garrison School principal, called Jacksonville police in November after a student spit on an employee. The student was arrested for aggravated battery. (Audio obtained by the Tribune and ProPublica from the Jacksonville Police Department. Audio was condensed for clarity.)

The child “initially stated he did not spit at anyone, but then said he did spit,” according to the police report, “but instantly regretted doing so.” The report said the child “stated he knew right from wrong, but often had violent outbursts.”

The worker asked to press charges, and the officer arrested the boy for aggravated battery.

((Jacksonville Journal-Courier))

One officer told the child he was under arrest while another searched and handcuffed him. They put him in the back seat of a squad car, drove him to the police station, read him his rights and booked him. Officers told the boy the county’s probation department would contact him later, and then they dropped him off with a guardian, records show.

The Tribune and ProPublica documented and analyzed 415 of Garrison’s “police incident reports” dating to 2015 and found the school has called police, on average, once every two school days.

The reports, written by school staff and obtained through public records requests, describe in detail what happened up until the moment police were called. These narratives, along with recordings of 911 calls, show that school workers often summon police not amid an emergency but because someone at the school wants police to hold the child responsible for their behavior.

Jacksonville police respond in November to a call from a Garrison School administrator about a student’s misbehavior. Officers arrested the student. (Armando L. Sanchez/Chicago Tribune)

About half the calls were made for safety reasons because students had fled the school. Those students rarely were arrested. Students whom police did arrest were most often accused of aggravated battery and had been involved in physical interactions such as spitting or pushing; by state law, any physical interaction with a school employee elevates what would otherwise be a battery charge to aggravated battery. The next most common arrest reasons were disorderly conduct, resisting arrest and property damage.

The school once called police after a student was told he couldn’t use the restroom because he “had done nothing all morning,” records show. The boy got upset, left the classroom anyway and broke a desk in the hallway.

The school called police on a 12-year-old who was “running the halls, cussing staff.”

And the school called the police when a 15-year-old boy who was made to eat lunch inside one of the school’s seclusion rooms threw his applesauce and milk against the wall.

Police arrested them all.

“These students, I would imagine, feel like potential criminals under threat,” said Aaron Kupchik, a sociologist at the University of Delaware who studies punishment and policing in schools.

“We are taking the actions of young people, and, rather than trying to invest in solving real behavioral problems that are very difficult, we are just exposing them to the legal system and legal system consequences.”

Jacksonville Chief of Police Adam Mefford said officers respond to every 911 call from Garrison on the assumption it’s an emergency, and as many as five squad cars can respond. Police often find a child in a seclusion room, Mefford said.

Adam Mefford, Jacksonville police chief. (Armando L. Sanchez/Chicago Tribune)

Officers determine whether a law has been broken but leave the decision whether to press charges to the school staff, he said. Police sometimes issue tickets to Garrison students for violating local ordinances, though arrests are far more common.

“The school errs on the side of pressing charges,” Mefford said. “They typically have the student arrested.”

He wondered whether school administrators call police so frequently because it’s become a habit that’s difficult to stop. “The school has gotten used to us handling some of these problems,” Mefford said.

Once arrested, the students are taken to the police station until parents pick them up or an officer takes them home. One mother told reporters that her 10-year-old son, who has autism and ADHD, was “bawling, freaking out,” when she picked him up after he was booked at the jail.

Mefford said he tried to make the experience less traumatic by moving the booking process from the county detention facility to the police station in 2021. He also said police refer students and their families to services in the community, such as counseling or substance abuse help.

After they are booked, students are screened to determine if they should be sent to a juvenile detention facility. Most are assigned to an informal alternative to juvenile court that Morgan County court officials regularly use, said Tod Dillard, director of the county’s probation department.

Jacksonville police bring the Garrison School students they arrest to this booking area at the police station to be fingerprinted and photographed. Students often wait in the room for a guardian to pick them up. (Armando L. Sanchez/Chicago Tribune)

These young people avoid going to juvenile court, but the “probation adjustment” process also requires them to admit guilt and denies them a public defender. Students must periodically report to a probation officer, typically for a year.

Violating the probation terms, such as by skipping school or getting arrested again, could lead to juvenile delinquency charges. In a juvenile court case, a student’s record of previous informal probation can be used when considering bail or sentencing.

Garrison has some students who are 18 and older, and they can be charged as adults. In 2020, an 18-year-old Garrison student was arrested for disorderly conduct after he “caused a disturbance” when he threw a cup of water and punched a pencil sharpener, court records show. That student spent four days in jail and was held on $3,000 bail. He pleaded guilty and was ordered to pay $439 in court costs and $10 a month in probation fees.

An 18-year-old student was charged with disorderly conduct after an incident at the Garrison School. (Obtained from the Morgan County Circuit Court. Redacted by ProPublica.)

Even for younger students, juvenile charges related to Garrison can later have consequences in adult court. If they are arrested again after they turn 18, prior cases can be used to illustrate that they have a police record.

The boy who spit in anger this fall at Garrison now has an aggravated battery arrest on his record. Even Fair, the school’s director, found the decision to arrest the child troubling.

The day after the boy was taken into custody, Fair told reporters she knew the child had been arrested but said she did not know why school administrators had called police. Reporters told her it had been for spitting on one of her employees.

“That’s not arrestworthy. That is not what we should be about,” Fair said. In a later interview, after learning more about the incident, Fair said staff considered the student aggressive and said, “I guess they did what they thought was right.”

From Empathy to “Coercive Babysitting”

Bev Johns, a local educator, founded Garrison in 1981 with just two students — and a belief that with a caring staff and the right support, they could be successful.

The children had exhibited such disruptive behavior that staffers at their home schools felt ill-equipped to teach them. Her solution: Open a school designed to teach students not just academic subjects but how to manage their behavior. It became part of the Four Rivers Special Education District, a regional cooperative that today provides services to students in school districts across eight mostly rural counties.

The school was considered groundbreaking, and many of the techniques that Johns implemented at Garrison are still widely considered best practice for managing challenging behavior: giving students space when they’re upset, teaching them ways to manage their emotions and giving them choices rather than shouting demands.

Those techniques often involve trying to understand what’s driving a student’s behavior. A student shoving papers off their desk may feel overwhelmed and need assignments in smaller increments. A student struggling to sit still may need classwork that involves them moving around the room.

Taking the students’ disabilities into account when they misbehave is now a firmly entrenched concept in education. In fact, it’s federal law.

“There’s a requirement both in the law — and just morally — that kids with disabilities are not supposed to be punished for behaviors that are related to their disability, or caused by it, or caused by the school’s failure to meet their needs,” said Dan Losen, director of the Center for Civil Rights Remedies at the University of California, Los Angeles.

Johns, who led Garrison until 2003, has dedicated her career to these ideas. She published research about “the Garrison method” to help other educators, taught at a nearby college and continues to speak regularly at conferences.

“Choice is such a powerful strategy. It’s such an easy intervention,” Johns recently told a standing-room-only crowd at an Illinois special education convention in Naperville. And schools should look welcoming too, she said. “I see some schools that look like prisons. Why would a child want to go there?”

Buses from school districts throughout an eight-county region of rural Illinois bring students to the Garrison School on a morning in November. (Armando L. Sanchez/Chicago Tribune)

The Garrison of today isn’t a prison, but it relies on rules and methods meant to manage students.

In recent years, staffers sometimes took away students’ shoes to discourage them from fleeing, though Fair said that has not happened under her watch. Before a recent Illinois law banned locked seclusion in schools, Garrison workers used to shut students inside one of the school’s several seclusion rooms — staff members would stand outside and press a button to engage a magnetic lock. The doors have since been removed, but the “crisis rooms” are still used. The Four Rivers district reported to ISBE that workers had restrained or secluded students 155 times in the 2021-2022 school year — three times as many incidents as students.

One of the seclusion rooms at the Garrison School, called “crisis rooms,” shown in 2019. (Obtained by ProPublica and the Tribune)

“They would lock me in a concrete room and then close the door on me and lock it. I would freak out even worse,” said an 18-year-old named Max, who left the school in 2020.

Some of the school’s aides are assigned to one of two “crisis teams” of four employees each that respond to classrooms and can remove students who are upset, disobedient or aggressive.

Employees’ handwritten records describe several incidents where they confined a child to a small area inside the classroom. In one case, the crisis team made a “human wall” around a 14-year-old student who was wandering in the classroom, swearing and being disruptive. A 16-year-old student told reporters that school employees drew a box around his desk in chalk and told him not to leave the area or there would be consequences.

Charles Cropp, who has worked as part of crisis teams at Garrison on and off since 2009, said he and his colleagues try to help students learn how to calm down when they are upset. He said teams aim to help students learn how to manage their emotions but that sometimes the young people also need to be held “accountable” when they are physical or disruptive.

“I was one that never really cared to watch kids get escorted out in handcuffs,” said Cropp, who returned to the school full time in late November. “I never liked it but in the same sense, they have to learn when you graduate and you are an adult in the public, you can't do those things.”

Garrison workers were recently trained in the Ukeru method, a crisis intervention system that uses blue shields to block students' physical aggression in place of physical restraint. (Armando L. Sanchez/Chicago Tribune)

Jen Frakes, a board-certified behavior analyst who worked at Garrison in 2015-16, described the culture at Garrison as “coercive babysitting.” She said she never saw a situation that warranted arresting a student.

“It seemed more of a power dynamic of ‘You’ll either follow my rules or I will show you who’s in charge,’” said Frakes, who runs a Springfield business that helps schools and families learn to work through challenging behavior. “When I saw a kid get arrested, he was sitting underneath his desk calm and quiet, and they came in and arrested him.”

This isn’t how other schools similar to Garrison are handling difficult student behavior.

Reporters identified 57 other public schools throughout Illinois that also exclusively serve students with severe behavioral disabilities. To determine how often police were involved at those schools and why, reporters made public records requests to all of the schools and to the police or sheriff’s departments that serve each one. Reporters were able to examine police records for 50 schools.

The two schools with the most arrests during the last four school years had 16 and 18, respectively. At 23 of the schools, no students were arrested in that period; six schools had only one arrest.

By comparison, five students were arrested at Garrison by mid-November of this school year alone, according to school and police records.

John McKenna, an assistant professor specializing in special education at the University of Massachusetts Lowell, said arresting students not only criminalizes them but also takes them out of the classroom.

“Kids are supposed to be receiving instruction and support and not opportunities to enter the school-to-prison pipeline,” he said.

“If you don’t provide kids with academic instruction, particularly those with behavior and emotional needs, the gaps between their performance and the peers who don’t have disabilities grows exponentially and sets them up for failure,” McKenna said.

The fact that Garrison students have disabilities that may explain some of their behavior appears to be lost on many of the officials who encounter them in the justice system; some described Garrison as a school for delinquents, not disabled children. A public defender tasked with representing students in juvenile court described the children as having been “kicked out” of their regular schools. An assistant state’s attorney thought students at Garrison had been “expelled” from traditional schools. Neither of those descriptions is accurate.

Rhea Welch, who worked under Johns and retired in 2016, said that during her 26 years as a teacher at Garrison it was not a place that relied heavily on police. “You don’t want your kids arrested, for heaven’s sake. You want to be able to work with them so that doesn’t happen, so they’re more in control,” she said.

For Johns, Garrison is no longer the school she remembers. Students need positive feedback, she said, not constant reprimands from and clashes with the adults they are supposed to trust.

“I always say when you’re having trouble with a child, the first place you look is yourself,” she said.

Johns read some of the school’s recent police incident reports and said she found them “bothersome,” adding, “It’s obviously hard for me to watch what’s happened.”

“I Did Everything I Could to Get Him Out”

Gabe, a 12-year-old boy with autism, likes to share with anyone who will listen all the details of his Pokemon collection and has gotten good at using online translators to read the cards with Japanese lettering on them. His stepmother, Lena, said that over the years Gabe has learned to ask for what he needs. When he gets overstimulated at home, he asks for space by saying: “I need you to back up.”

(When using the last name of a parent would identify the student —– and in doing so, create a publicly available record of the student’s arrest —– ProPublica and the Tribune are referring to the parent by first name only.)

After an incident at the Garrison School, Gabe and his family decided he couldn’t go back. Shown with his father, Billy, and stepmother Lena, Gabe, who is 12 and has autism, now goes to a school 90 minutes away. (Armando L. Sanchez/Chicago Tribune)

Gabe ended up at Garrison in 2019 after having difficulty in traditional schools. He will sometimes yell and lash out when frustrated.

Lena said school officials asked her to pick up Gabe if he got upset. “I would hear Gabe screaming, and then heard them screaming back at him,” she said. “He’d say, ‘Leave me alone! Leave me alone!’ And they’d still get up in his face.”

And then one day, Gabe and Lena said, school workers barricaded him at his desk by pushing filing cabinets around it. He pushed over one of the cabinets while trying to get away, and the school called the police, Lena said.

“We had to pick up our 10-year-old at the police station,” Lena said. “I would freak out if I got boxed in with filing cabinets.”

It got so that Gabe would wake up angry and not want to go to school.

“That school is at the bottom of the food chain. If you got all the schools in the world, they would be at the bottom of the food chain. The workers there are mean,” said Gabe.

Other parents described their children becoming angrier, more withdrawn; the students dreaded going to school at Garrison. Some families begged their home districts to find another school for them.

“It was like hell,” said one mother, who said her son was miserable while he was a student there. “I did everything I could to get him out.” Her son attended Garrison for about five years before she got him returned to his home school. He is in his first year of college now.

Michelle Prather, whose daughter Destiny attended Garrison from fifth grade until she graduated in 2021, said school employees threatened to call police over minor missteps: throwing a piece of paper, or pushing a desk.

“She would walk out of a room and they’d say, ‘We’re going to call police,’” Prather said. Destiny was arrested at least once after she shoved an aide while trying to leave a classroom.

Prather and other caregivers said watching their children be arrested over and over was troubling, but it was also upsetting to realize that the school wasn’t providing the support services the students needed.

Destiny has intellectual disabilities and ADHD as well as acute spina bifida, a defect of the spine. Because of her medical condition, Destiny had difficulty sensing when she needed to use the restroom. She would sometimes get up from her desk and tell staff that she urgently needed to go.

“They would say, ‘No you don’t,’” said her mother. “She would have accidents. I would have to bring her clothes.”

Destiny, 19, who graduated from Garrison in 2021, plays with her family’s dog inside their home. (Armando L. Sanchez/Chicago Tribune)

Madisen Hohimer, who is now 22 and working as a bartender, said she transferred to Garrison in sixth grade when her home school recommended it. She remembers Garrison as a place that failed to help her. Hohimer said she frequently ran away from the school and employees took her shoes to try to keep her from fleeing.

“I was never involved with the police before Garrison. I started mostly acting out when I got sent over there because I felt like I had nobody,” she said. One time, she said, she swung and kicked at staff after they cornered her in a seclusion room. She wound up being arrested for aggravated battery.

Just weeks before Hohimer was set to graduate, she left for good. “I wish they would have found a way to help me,” she said.

After Gabe’s filing cabinet incident, his parents kept him home until he could be placed at a private therapeutic school three counties away. He’s been going there since last year.

“It’s an hour and a half ride and he’d rather do that than go to Garrison,” said Lena, a nursing student. He’s thriving there, she said, and noted that the school has never called police about Gabe’s behavior.

At their home in Jacksonville, Gabe shows his mother, Lena, a record player he made at school out of a cup and paper clip. (Armando L. Sanchez/Chicago Tribune)

But one of Lena’s other children, Nathan, remained at Garrison.

Then one morning in late September, she got a text from her son:

“I’M AT THE POLICE STATION THERE GOING TO GET MY FINGERPRINTS AND TAKE A PICTURE OF ME AND BRING ME BACK TO THE HOUSE.”

“A Staff Member Will Probably Press Charges” A 14-year-old student pushed an aide and then left the school. A school employee called police to request help finding the student and having a school worker press charges. (Audio obtained by the Tribune and ProPublica from the Jacksonville Police Department. Audio was condensed for clarity.)

Nathan, who was 14 at the time, had been arrested after he hit a classmate and then shoved an aide who was trying to physically keep him in the classroom, according to a school report. He then left the school. In a 911 call, a school administrator asked police to find Nathan and also to come to the school “because a staff member will probably press charges.”

Nathan’s family decided not to send him back to Garrison. He’s taking classes online instead.

“That was my worst mistake, putting either of my kids in Garrison,” Lena said. “If I could take it back, I would.”

((Jacksonville Journal-Courier)) No One Watching

Warning signs that Garrison was punishing students with policing have been there for years, waiting for someone to take notice.

Since as far back as 2011, the federal government has published data online about police involvement and arrests at schools. That year, the data showed, Garrison called police on 54% of its students and 14% were arrested. Three subsequent publications of similar data show the arrest rate climbing each time — until, in 2017-18, more than half of Garrison’s students were arrested.

Though the federal data could have raised red flags, Illinois does not collect data on police involvement in schools and does not require that the state education board monitor it. The state does monitor other punitive practices in schools, such as their numbers of suspensions and expulsions, and requires schools to make improvements when the data shows excessive use.

Illinois legislation that would have required ISBE to collect data annually on school-related arrests and other discipline stalled last year.

The state board, however, has issued guidance about involving police in school discipline. Earlier this year, ISBE and the state attorney general’s office told school districts across the state to use social workers, mental health professionals and counselors — not police — to create a “positive and safe school climate.”

Before last week, no one from ISBE had been to Garrison for at least the last seven school years. There had been no complaints that would have triggered a monitoring visit, said Matthews, the state board spokesperson.

Garrison has its own school board, and it — not the state board — is responsible for monitoring the school, including police activity, ISBE officials said. The school board is made up of representatives from some of the 18 school districts that rely on Four Rivers for special education staffing and placements at Garrison.

The board president, Linda Eades, said after a November board meeting that she couldn’t answer questions about the police involvement at Garrison and described the board as hands-off. “We don’t get down in the trenches,” she said.

Fair, the district’s director, said she is trying to understand the scope of police involvement at Garrison and is “digging into” school reports. “I’m trying so hard. It’s a lot of stuff to change,” she said in an interview. “There are a lot of things that need to improve.”

Earlier this year, Garrison was awarded a $635,000 “Community Partnership Grant” through ISBE for training to help students with their behavioral and mental health needs and help schools reduce their reliance on punitive discipline. ​

Some of the grant money has been used to pay for training in Ukeru, a method of addressing physical aggression that doesn’t involve physically restraining a child.

The Ukeru method focuses on training workers in how to prevent challenging behavior from becoming a crisis and uses soft blue pads to block kicks and punches if necessary. Garrison workers were trained in the method in October; blue pads are now propped up in the hallways in the building.

Starting two weeks ago, Fair said, the school began using its two social workers and a social work intern in a new way. One of the social workers is now available to go into a classroom when a student needs help, providing a way to intervene before behavior escalates into a crisis. Fair said she also plans to incorporate social emotional learning into the curriculum.

School administrators mentioned the Ukeru training and some of Garrison’s latest efforts at the November board meeting, which lasted about 20 minutes. Fair said the school had begun to monitor police involvement and arrests and said she is trying to “boost up some of the supports for the kids.”

Her priority now, she assured them, is to “really help make it a therapeutic place for the kids.”

That’s what it was always supposed to be.

Lynn Dombek contributed research.

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