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HealthQ’s Cara Anthony and Blake Farmer share know-how for parents navigating the decision to seek out mental healthcare for a child.

Divorce rocked the lives of Marcela Cabay and her daughter, who was a preschooler at the time. But counseling didn’t come until years later, when Cabay noticed her daughter was tensing up every time a storm rolled through or whenever they were preparing to be apart.

“She was experiencing just a lot of anxiety, really starting to think worst-case scenarios all the time, just really struggling in her daily life,” said Cabay, who is a life insurance broker outside Austin, Texas.

At first, Cabay attempted to help her daughter herself. She suggested coping strategies for the 8-year-old to regulate her emotions. She hoped the behavior would pass. But, over time, the anxiety got worse.

“That’s when I finally was like, ‘I think it would be really good for her to talk to a licensed third-party person — that’s not me,’” Cabay said.

Her daughter’s counseling journey started off shaky because she was seeing a counselor weekly for two months with no results, while paying out-of-pocket. So they found a counselor who was a much better fit. Within six months, Cabay’s daughter had made so much progress that Cabay decided to suspend her weekly visits.

Determining when it’s time for professional help can be hard, especially because counseling can require a significant commitment of time and money. Therapists offer three easy-to-remember criteria to help assess challenging behavior: frequency, duration, and intensity.

1. Frequency: Is the behavior happening over and over?

Frequency is the easiest of the three to measure. Say you roll up to the park to find a hive of activity on the playground, but your child refuses to get out of the car because they’re anxious about playing with other kids. If it happens once or twice, it could be because they had a hard day and weren’t ready to be with other kids, said licensed clinical social worker and play therapist Paris Goodyear-Brown. But avoidance behavior that occurs regularly indicates a child may need extra support.

2. Duration: Does the behavior last a long time?

Goodyear-Brown is clinical director of Nurture House in Franklin, Tennessee, where parents often come with concerns when their children start preschool and are anxious about saying goodbye to them, she said. Some amount of separation anxiety is developmentally appropriate. If it regularly lasts hours, however, she generally recommends pulling in professional support.

“The child may be crying, ‘Mommy, don’t leave me,’ but as soon as the parent has departed, they enjoy the day and they’re engaged with their teachers,” she said. “That’s a really different presentation than the child who cries for three hours at school, is inconsolable, and isn’t able to learn.”

3. Intensity: Does the behavior disrupt everyday life?

Intensity can be harder to quantify because it’s less likely to be measured in hours or days. Goodyear-Brown offers obsessive-compulsive behaviors as an example: If a child won’t leave the house without making sure all their toys are lined up just right or checking 10 times to make sure the doors are locked before bed, their behavior signals a need for professional help.

Children can also show intensity in their lack of emotions. “To be numbed out, shut down, dissociated, it’s just as big,” she said. “It’s just quieter.”

Goodyear-Brown said some life events are intense enough to merit counseling even if a child isn’t behaving differently, including those considered one of the 10 “.” ACEs, as they’re more commonly known, include child abuse, neglect, suicide or depression in the household, or divorce.

Guidance, Not Certainty

Ultimately, the three criteria help parents assess whether behavior is overly disruptive to daily life. Becky Evans, a licensed professional counselor supervisor in Fort Worth, Texas, advised being on alert for the times when “you are not able to go and do what you would normally go and do because of whatever is happening with them emotionally.”

But whether the verdict points to counseling also depends on household dynamics and family history.

“It is kind of subjective to the person. What feels frequent? What feels intense? And how long is too long for this to have been going on?” Evans said.

When in doubt, she said, therapy is usually helpful. And parents can also benefit from having a “teammate,” to ensure they’re not inadvertently reinforcing the anxiety, Goodyear-Brown said.

However, some psychologists have raised concerns about or . Parents can be quick to think developmentally appropriate behavior is abnormal, said Christina Confroy, a licensed marriage and family therapist in Nashville, Tennessee. During consultation calls, she’s grown comfortable telling parents when she doesn’t see a need for counseling while also urging them to “trust their sense.”

People and Policy

Like , Confroy has stopped accepting health insurance. For her, the decision hinged on the requirement to make an official diagnosis in order to get paid. The administrative burden and low reimbursement rates have driven many others to leave insurance networks behind.

Paying for counseling out-of-pocket averaged in 2023, according to research published in Health Affairs Scholar. Confroy charges $195 per 50-minute session. She lowers the fee when the need arises, she said.

“People don’t plan for counseling the way they plan for groceries. It’s an enormous responsibility financially and time-wise,” said Confroy, who often recommends school-based counseling and other lower-cost first steps.

“You might not want another podcast to listen to or a book to read,” she said. “But I’m really big on accessing existing support.”

This installment is part of HealthQ’s reporting on caregiving among the sandwich generation. For more, check out the series archive.

Katherine Ruppelt and Emily Siner at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/mental-health/healthq-children-therapy-experts-help-parents-decide/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Jill Woodrow reached a tipping point as a caregiver when her mom began struggling to communicate information about her latest doctor appointments.

Woodrow’s mother, a uterine cancer survivor, was seeing specialists to get to the bottom of several new, concerning symptoms. “When she would try to tell us about what happened or what the conversation was, she couldn’t remember,” Woodrow said.

So Woodrow, a school therapist, started taking her mom to medical appointments. Woodrow was able to ask doctors questions and explain their answers. But it was difficult to juggle her mom’s medical care while working, raising three daughters, and coordinating with her husband’s work schedule.

“I was having to leave work early, take sick time, personal time,” she said. “All of a sudden, my best friend said to me, ‘Jill, have you ever thought about taking FMLA?’ And honestly, I never did.”

FMLA refers to leave protected by the , a federal law that guarantees employees up to 12 weeks of unpaid leave per year for their own serious health condition or to care for a parent, spouse, or child with a serious medical condition.

During eight weeks away from work, Woodrow helped with her mom’s medical care, cooked meals, and helped with housework. Her mom was later diagnosed with breast cancer and died in 2023.

“Taking FMLA really helped me focus on my family and my mom, and it was honestly the best thing that I could have ever done,” she said. “I have no regrets.”

But navigating the intricacies — logistical and emotional — of this federal policy can be challenging. Here’s what to know.

1. Read the fine print.

When FMLA was passed in 1993, it was groundbreaking, said Jocelyn Frye, president of the National Partnership for Women & Families. Before then, there were no federal protections for employees who needed to take time off for medical reasons.

Roughly 60% of workers in the U.S. , according to the Department of Labor. To be eligible, people must have worked for a company with 50 or more employees for at least a year. Within that time, employees must have worked at least 1,250 hours, which translates to working full-time for about seven months.

Keep in mind, FMLA applies only to caregiving if your child, spouse, or parent is facing a “serious medical condition,” like inpatient care or continuing treatment. If you need to take time from work to care for someone with a short-term illness or routine medical care, you will likely need to use sick leave or some other kind of paid time off. And FMLA generally does not apply to caring for in-laws, siblings, or close friends.

2. Getting paid on FMLA is possible — but far from guaranteed.

The federal law requires employers only to provide unpaid leave, which limits how many people consider FMLA. According to the Department of Labor, two-thirds of eligible employees said they wouldn’t take FMLA because they to go without pay.

However, some people can still get a paycheck while taking FMLA. now require employers to provide paid family leave programs. Alternatively, you can apply another form of paid time off, like paid vacation or sick leave, to the time you take away from work. This is called concurrent leave. Some employers require employees to apply any available leave they have during the time they’re taking FMLA, which in practice ensures that employees do not take more than the protected 12 weeks of leave within a year.

So why use FMLA instead of just taking PTO or stringing together sick days? Under the federal requirements, FMLA protects an employee’s job and healthcare, which is not the case for other kinds of leave.

3. Communicating clearly about leave with your employer is key.

In a 2018 survey conducted by the Department of Labor, one-third of FMLA-eligible employees shared that they avoided taking leave because they feared losing their job or being treated differently at work, or because they considered their work too important.

Woodrow had to navigate her own hesitation. “I have a lot of students on my caseload, and I felt so guilty about leaving them,” she said.

But FMLA advocate Frye said employees should remember that FMLA exists to help them “take the time that they need to support their families — and not feel like they have to pretend like that’s not a natural part of life. Because it is.”

Frye suggests employees be proactive when approaching their manager about planning a leave. “I’d say, ‘I want to work with you to make this work for everybody,’” she said. In that conversation, employees could also offer to support their manager or other co-workers when those colleagues face a caregiving need in the future. Doing so could help shift a workplace culture to be more accepting of caregiving realities and FMLA leave over time, Frye added.

People and Policy

The has had no major updates since it was passed in 1993, although there have been modifications to the leave options available to military service members and their families. A from the Pew Research Center found that 69% of Americans support the federal government requiring employers to provide paid family leave for caregiving for an aging family member.

This <a target="_blank" href="/news/healthq-fmla-caregiving-family-leave/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.

In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. Ñî¹óåú´«Ã½Ò•îl Health News agreed to use only her nickname to protect the safety of her son.

“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”

Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.” Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem — flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond — when there’s no safe place to care for the child.

Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia . This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.

Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment, or other assistance.

“It’s definitely a national problem,” said , a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ . “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”

It’s gotten so bad that Missouri lawmakers have repeatedly to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether.

Quette said her son was housed in a private hospital room while he waited for the state to find a place for him elsewhere. Other children spend weeks, months, and, in extreme cases, years in acute care hospitals while grown-ups scramble to find them safe places to go, according to Lynn Rasnick, a nurse and vice president at the Missouri Hospital Association. She said some children sleep on emergency room stretchers. They sit in windowless rooms. They miss school. And they’re exposed to all the trauma that comes through the hospital on any given day.

To keep young boarders safe, some hospitals hire “sitters” for kids with no place to go, while other institutions have passed along chaperoning duties to hospital workers.

But all that comes at a cost beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.

According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year — more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.

One study found that boarding a child with a complex medical condition in Minnesota a day in 2017. And a 2023 Minnesota Hospital Association survey of about 100 hospitals of “unnecessary” patient stays for adults and kids at $487 million for 195,000 days of care.

Lin, the Boston-based pediatrician, said a shortage of home healthcare workers forces some families to keep their children in the hospital, even though they’re well enough to go home.

State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides healthcare coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.

Quette, a single mom who once worked as a paid caregiver and now works as a custodian, said her family repeatedly asked hospitals for a home health aide but was told her son’s insurance wouldn’t cover it. Her son’s paternal grandmother, who had helped raise him, was in a wheelchair herself at that point. Quette’s son needed his bandages changed regularly, and she had to turn him around in his bed every four hours.

“I had to wake up out of my sleep to rotate him,” Quette said. “And I couldn’t do it. I was oversleeping.”

Parents across the country face similar challenges. Last year, Georgia officials said 500 children had been and turned over to the state’s Division of Family & Children Services due to complex behavioral or psychiatric needs.

In Colorado, a hospital worker emailed a state representative for help after an autistic 13-year-old boy at UCHealth Longs Peak Hospital in Longmont. After his father left him there, officials told hospital workers that it would take months to find a safe place for the boy to go.

Last fiscal year, the Illinois Department of Children and Family Services logged 304 cases of youth in psychiatric hospitals beyond medical necessity, according to an released by the state. About 43% of those cases were among patients ages 13 to 16.

This year, Missouri state Sen. , a Republican, introduced a bill that would require his state to move faster and pay for care when a child is stuck in a hospital. Similar bills died in committee and . This year, Burger’s bill remained stuck in committee when the legislative session ended May 15.

According to a attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already to fund its upcoming $50.7 billion budget.

Over 18 months, the Mercy hospital system, one of the largest in Missouri, logged 2,687 boarding days, testified Patty Morrow, a Mercy vice president, in a March hearing on the bill. That included adults who also were stuck without a safe place to go.

“That was never really ever the intended purpose of a hospital,” Morrow told Ñî¹óåú´«Ã½Ò•îl Health News. “The current state cannot be the ongoing solution.”

The bill requires the juvenile court system to ensure that children are placed in “an appropriate setting,” which would entail involvement of social workers and other public servants.

Rasnick, with the Missouri Hospital Association, also spelled out the issue during the hearing. “You can’t just discharge a 9-year-old into the street,” she told lawmakers.

Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with Ñî¹óåú´«Ã½Ò•îl Health News.

His mother said she is still holding on to his brace, bandages, ointment, and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”

This piece was supported by a grant from the Association of Health Care Journalists, with funding from The Joyce Foundation.

This <a target="_blank" href="/health-industry/hospital-boarding-social-stays-children-kids-missouri-illinois/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

LISTEN: AI scribes are changing medical care. Here’s what to know if the technology shows up at your next doctor’s appointment.

Family physician Eric Boose has been using an artificial intelligence tool to get back to what he calls “old-fashioned medicine” — talking with patients face-to-face, without having to type into a computer at the same time. 

“I can really just sit there and engage and just focus on them and listen,” said Boose, who . 

Roughly two years ago, he started using an AI notetaker app during patient visits. The tool listens while he talks with patients and then automatically generates a visit summary based on the conversation. The summary is usually ready within seconds after the appointment ends. 

“It’s taking care of all that tedious work of charting and taking notes during the visit,” he said. “It’s just freeing up a lot more time to get that done, and I can get home to my family earlier.” 

Nearly a third of physician practices are using AI scribes and others are working to add the tool, in an effort to cut down on administrative work. 

If your practitioner suggests using an AI scribe at your next appointment, here are three things to keep in mind:

1. Clinicians should ask for your permission. 

At the start of an appointment, your doctor might ask something like, “Are you OK if I use an AI scribe to help me take notes during this appointment?” A common practice is to accept verbal, not written, consent from patients before turning the tool on. However, the legal requirements for getting permission to record a patient conversation vary by state. 

Boose said you can ask to pause the AI scribe at any point, especially to discuss something sensitive. And if you decline altogether, your practitioner will likely return to taking manual notes on a computer. 

2. AI scribes make mistakes too, so check their work. 

Like other AI tools, medical scribes can “hallucinate,” or spontaneously add errors into a record. AI scribes can also omit important information or miss context clues within a conversation. 

Clinicians are supposed to review and edit the AI-generated visit summaries before adding them to a patient’s record. As a patient, it’s a good practice to carefully review your visit summary and contact your health provider if you notice errors. 

3. Yes, the AI company could use your data, with limitations. 

Companies and health systems that offer AI scribe tools have access to medical data and are subject to federal standards about how they use and store patient data, under the Health Insurance Portability and Accountability Act, more commonly known as HIPAA. 

They may use data from your appointment to help improve their software without informing you, said Darius Tahir, who reports on health technology for Ñî¹óåú´«Ã½Ò•îl Health News. “ If information is ‘de-identified,’ which can mean stripping it of identifiers [and] making sure it’s not personally traceable back to people, then it is more free to be used in more ways,” he said. “There are way fewer regulatory requirements.” 

If you want to know how your data is being used, ask either your practitioner or medical system for more information. But you might not get a clear answer, Tahir said. 

People and Policy 

The U.S. health care system will likely continue to integrate AI technology into patient care. The Trump administration strongly supports the development and use of AI, especially in health care. In early 2025, President Donald Trump issued  reducing existing regulations on AI to help the U.S. “retain global leadership of artificial intelligence.” In December, the U.S. Department of Health and Human Services released an  stating that the department supports “integrating AI to modernize care and public health infrastructure to improve health at the individual and population levels.” 

Emily Siner at Nashville Public Radio contributed to this report. 

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/health-industry/healthq-ai-scribes-notetaker-doctor-visit-data-privacy/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

LISTEN: Taking a GLP-1? Doctors say don’t forget to move your body and tend to your mental health, too.

Severe ankle pain drove Jelon Smart to start taking a weight loss injection a year and a half ago.

Smart was 285 pounds and worked as a caterer in Savannah, Georgia. After she’d been standing on her feet for long hours, her ankles would be “as swollen as a football,” she said. She was walking with a limp. An orthopedic doctor diagnosed her with Achilles tendinitis and recommended losing weight to mitigate the symptoms. Smart began taking the brand-name GLP-1 Ozempic.

The appetite suppression resulted in her shedding pounds quickly, at first.

“I lost 30 pounds initially without changing anything,” said Smart, 48. But then she found herself unable to shed additional pounds.

GLP-1s have quickly become one of the most popular types of weight loss drug in America. Nearly 1 in 5 people have taken them at some point, , a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News. But doctors say it takes more than a regular shot for patients to achieve their weight goals in the long run.

Here’s what to know.

The Old-School Rules of Weight Loss and Health Still Apply

Regular exercise, smart food choices, plenty of sleep — those basic, healthy lifestyle choices are not only going to help you lose weight on a weight loss drug but also help you keep it off, said Dafina Allen, an  obesity medicine physician who runs a clinic in Saginaw, Michigan. For example, some people find that they eat less on a GLP-1, “but they’re not improving their health because they’re not exercising. They’re not improving the quality of the food they’re eating,” Allen said. The path to weight loss is also guided by hormones, metabolism, and genetics.

After her weight loss on Ozempic plateaued, Smart realized she needed to start moving her body, too.  “I’m in the gym now six days a week,” she said. “I went from 285 to 175” pounds. The swelling and pain in her ankle went away as well.

Mental Health Matters, Too

The mind and body are deeply connected. Food and body image can be especially emotional, Allen said. “I can tell you about the patients that I helped lose 50 pounds, that I helped lose 100 pounds, and they still look in the mirror and are not happy.”

The key is seeking help for mental health along the way, said Gerald Onuoha, who practices internal medicine in Nashville, Tennessee. “Making sure that you’re talking to people about your problems, whether it’s a family member or a licensed professional, I think goes a long way,” he said.

Work With a Doctor To Closely Monitor Your Dosage

Onuoha said people can run into serious problems if they increase their GLP-1 dosage too quickly or don’t follow the recommended schedule. He’s seen patients come to the hospital with pancreatitis, gallstones, or acute kidney injury.  “I always ask patients that are on GLP-1s: How long have they been on them?” he said. “Are they adhering to the directions? Because those things determine whether or not you’re going to have those complications.”

Part of the issue, Allen said, is that GLP-1s are relatively easy to access — and often much cheaper — through online pharmacies or websites, but those providers may not educate patients about their dosage or side effects. “So they might just go online, find a random company that will ship it to their house, where they don’t even know what dose of the medication they’re taking, or even if the medicine is safe for them as the patient with the medical conditions they have,” she said.

People and Policy

GLP-1 drugs can be costly, and most insurance programs — public or private — don’t cover the medications for weight loss. Medicaid, the government program that covers 69 million Americans, covers GLP-1s for medically accepted conditions like diabetes, but only about a dozen state Medicaid programs cover GLP-1s for obesity treatment, . For older Americans with Medicare, the federal government is planning to allow temporary coverage of GLP-1s for weight loss starting in July.

Katherine Ruppelt at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/mental-health/healthq-glp1-weight-loss-drugs-mental-health-dosage-exercise/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

LISTEN: Your dental insurance might not cover what you expect.

Russell Anthony made eight trips to the dentist last year. The 65-year-old retiree in Nashville, Tennessee, hopes to go less often in 2026, but he’s already made a few visits.

“I had a root canal just last week that was like $500,” he said. “The week before that, I had a crown that cost me several hundred dollars. And as we speak, I have a broken tooth, and I have to go and see the dentist soon.”

In all, Anthony — uncle of HealthQ host Cara Anthony — expects to pay about $2,000 for dental care this year, even though he has dental insurance.

“Trying to weigh the cost of when to go to get dental care and paying for it, versus the other needs that I have, is something that’s very important,” Russell Anthony said.

The American Dental Association reported that had dental insurance in 2021. But that coverage does not necessarily protect against large bills. In fact, 1 in 4 adults with dental insurance reported costs as a barrier to care, according to a by KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

Here are three things to know to better understand your insurance plan and keep your dental costs as low as possible:

1. Even With Dental Insurance, You’ll Have To Pay for Procedures

Dental plans typically cover routine care in full but pay only a portion of additional work. Benefits vary, but many plans follow the “100/80/50” rule, covering 100% of preventive care like cleanings and exams, 80% of basic procedures like fillings and root canals, and 50% of other major procedures.

Plus, dental plans often have a maximum annual payout, usually between $1,000 and $2,000. Patients are responsible for any costs above that. For example, if your plan maxes out at $1,500 and you need $4,000 of dental treatments, you will be on the hook for the difference of $2,500.

2. Facing a Big Dental Bill? You Have Options

It might feel uncomfortable to talk about finances directly with a dentist, but it’s helpful to be up-front about what you can afford.

Many dentist offices offer financial options to help patients manage the cost of care, including pretreatment estimates and payment plans. If you get an estimate that seems especially high, talk through the items and consider getting a second opinion. It never hurts to ask the office for a discount.

If you need a lower-cost alternative, consider looking into dental schools, which often offer discounted care, or , which use sliding scales based on a patient’s income.

3. Seeing Your Dentist Regularly Can Help Keep Costs Low

Sarah Olim, a general dentist in Katy, Texas, encourages her patients to come in for visits every six months.

“The best thing that you can do to mitigate the cost of going to the dentist is make sure that you are going regularly and trying to take care of things early,” she said.

Olim welcomes patients no matter how long it’s been since their last visit. But she cautioned that patients who wait a few years between visits may find their appointments are more expensive and more uncomfortable.

The reason? Dental problems often don’t resolve on their own. For example, a small cavity that needs a quick filling might cost $200. If left untreated, it could turn into a larger issue requiring a root canal and crown — and cost thousands.

Your dentist will also encourage you to follow the best preventive maintenance: brushing your teeth for two minutes twice a day. Olim tells her patients to use a timer or listen to a favorite song to make sure they brush long enough.

People and Policy

Federal lawmakers have tried to increase children’s access to dental insurance. Under the Affordable Care Act, dental care is considered , so health insurance plans on the individual marketplace must offer dental coverage for those 18 or younger. State Medicaid programs are also for children.

Emily Siner at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/health-care-costs/healthq-dental-care-insurance-large-bills/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

LISTEN: Is it worth it to set up a health savings account? HealthQ has answers.

When Mike McKee thinks about saving money for the future, he has a few priorities. Maxing out his retirement is one. Building up his kid’s college fund is another.

Opening up a health savings account? Not so much, even though he qualifies because of his high-deductible health plan.

“I’m so frustrated with the system that has anything to do with medical savings,” said McKee, 42, a self-employed musician in Nashville, Tennessee. “I’m just so turned off emotionally that I have to be really careful to be logical about it.”

More Americans are eligible to open an HSA — a kind of tax-free savings account that lets them sock away money for medical expenses — after changes that were part of new legislation last year. But an HSA can be a headache to set up and navigate.

Here’s what to know about how they work and when they’re worth it.

Like a Tax-Free Investment Account for Medical Expenses

With an HSA, you set aside money from your paycheck before taxes, and you can use that money to pay for medical expenses later. , including medications, glasses, orthodontia, and many kinds of therapy.

You have options for the money in the account, including investing it. Some people call HSAs a “triple tax advantage”: There are no taxes on the money that goes in, no taxes on any interest earned, and no taxes on the money that comes out for medical expenses.

Pro tip: An HSA is not the same as an FSA, or flexible spending account, even though it sounds similar. An FSA also lets you put pretax income into an account for medical expenses, but you typically lose unspent money at the end of the calendar year. By contrast, HSA money stays in your account until you spend it. Think F for “forfeit” and H for “hold on to.”

The Admin Work of an HSA Can Be a Real Barrier

First, you have to find out whether your health plan allows for an HSA. Most high-deductible health plans do, but with these plans you might have to spend thousands of dollars before most benefits kick in. Starting this year, plans on the individual Affordable Care Act marketplace that are categorized as “bronze” or “catastrophic” are also eligible. (The easiest way to find out whether you qualify is to call the number on the back of your insurance card and ask.)

Then, you have to open the HSA on your own through a financial institution — although if you get health insurance through a job, your employer might have preferred institutions. And finally, you have to keep track of your qualified medical expenses. You pay for them using a special debit card or by submitting claims for reimbursement, usually through an online portal. Either way, it’s smart to hold on to receipts.

People and Policy

If you’re living paycheck to paycheck, you may find it difficult to take advantage of the tax savings that come with an HSA. “HSAs, in this way, tend to benefit more the higher-income enrollees, because those are the ones who have the disposable income to set aside at the end of the month,” said Michelle Long, a policy researcher at KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News. Plus, people with higher incomes and higher tax brackets have more to gain from getting discounts on their taxes, which is basically what an HSA provides.

Katherine Ruppelt at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/health-care-costs/healthq-hsa-health-savings-accounts-insurance-high-deductible-plans/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

LISTEN: If you’re newly pregnant and not able to afford health insurance, you may qualify for Medicaid. Reporters Cara Anthony and Blake Farmer — hosts of the new series “HealthQ” — explain that every state has a program to provide coverage for pregnant people.

When she noticed an unusual craving for hot dogs, Matte’a Brooks suspected her body was telling her something, so she decided to take a pregnancy test. She took two just to be sure. Both were positive.

“I was definitely scared,” said Brooks, 23, who was uninsured. “I was like, OK … I’m pregnant, so where do I go from here?”

Until then she hadn’t thought much about health care, but that changed when she found out that her daughter was on the way.

Brooks got that news last winter. The mix of joy, anxiety, and excitement she felt mirrors what many new parents feel at this time of year. Many Americans find out in January or February that they’re expecting, because in the U.S., August has consistently high birth rates.

A growing body of research shows that prenatal care can make a huge difference to the long-term health of both the parent and baby. This is part of why offers health coverage to pregnant women who meet income requirements and might otherwise go uninsured.

As a result, Medicaid pays for more than 40% of births in the U.S. and an even higher percentage in rural areas, according to KFF. But Medicaid also comes with limitations, and providers may restrict how many Medicaid patients they take, since the payments are than other insurers’.

Here are three things to know about signing up for Medicaid when pregnant.

1. Pregnancy Makes You a Priority

To sign up for government health care, you have to meet a number of requirements that vary widely by state. Most importantly, your income has to be below a certain threshold. In several states, most adults cannot qualify, regardless of income, if they’re not disabled or the parent of a child.

But the math is different for pregnancy. In Tennessee, for example, the eligibility cutoff in pregnancy is the income threshold for some other residents. So if you didn’t qualify for Medicaid previously and are now pregnant, it’s worth double-checking your state’s requirements.

2. Getting Covered Can Be Surprisingly Easy

To apply, you’ll likely proof of income, your Social Security number, and proof of residency. Brooks, an Illinois resident, told HealthQ that she found the sign-up process surprisingly easy. She learned about Medicaid from the provider at her initial prenatal visit.

“They asked if I had insurance. I didn’t know anything at the time,” she said. The nonprofit clinic gave her some phone numbers for the state Medicaid agency. She called and went to an in-person appointment to complete her application. She walked out of the office with coverage. In , pregnancy results in “presumptive eligibility,” which provides immediate coverage — even without confirmation of the pregnancy — while the application goes through the approval process.

3. Coverage Can Go Beyond Standard Medical Care

Medicaid provides all prenatal care at no out-of-pocket cost and usually a of postpartum care. That’s what happened to Brooks: Her appointments, medications, and delivery were free.

States cover dental, vision, and mental health care to varying degrees. Ashley Farrell, who lost her job when she was pregnant and applied to Medicaid in Georgia, said she received “rewards for going to your appointments,” including . Benefits vary by state.

People and Policy

Some maternal health advocates about how Medicaid cuts in the One Big Beautiful Bill Act will affect pregnancy coverage. Though it’s unclear when or how, states might scale back eligibility or offerings for expectant mothers.

Katherine Ruppelt at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer — approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/health-care-costs/healthq-pregnancy-pregnant-uninsured-medicaid-prenatal-postpartum/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

“Get him off the table,” the doctor recalled telling the surgical team at SSM Health Saint Louis University Hospital as the team cleaned Black’s chest and abdomen. “This is my patient. Get him off the table.”

At first, no one recognized Zohny Zohny in his surgical mask. Then he told the surgical team he was the neurosurgeon assigned to Black’s case. Stunned by his orders, the team members pushed back, Zohny said, explaining that they had consent from the family to remove Black’s organs.  

“I don’t care if we have consent,” Zohny recalled telling them. “I haven’t spoken to the family, and I don’t agree with this. Get him off the table.”

Black, his 22-year-old patient, had arrived at the hospital after getting shot in the head on March 24, 2019. A week later, he was taken to surgery to have his organs removed for donation — even though his heart was beating and he hadn’t been declared brain-dead, Zohny said.

Black’s sister Molly Watts said the family had doubts after agreeing to donate Black’s organs but felt unheard until the 34-year-old doctor, in his first year as a neurosurgeon, intervened.

Today, Black, now 28, is a musician and the father of three children. He still needs regular physical therapy for lingering health issues from the gun injury. And Black said he is haunted by what he remembers from those days while he was lying in a medically induced coma.

“I heard my mama yelling,” he recalled. “Everybody was there yelling my name, crying, playing my favorite songs, sending prayers up.”

He said he had tried to show everyone in his hospital room that he heard them. He recalled knocking on the side of the bed, blinking his eyes, trying to show that he was fighting for his life.

Organ transplants save a growing number of lives in the U.S. every year, with performed in 2024, according to the Organ Procurement and Transplantation Network, which oversees the nation’s transplant system. And awaiting donations that never come.

But organ donation has also faced ongoing , including reports of patients showing alertness before planned organ harvesting. The results of a into a Kentucky organ donation nonprofit, first disclosed by in June, found that during a four-year period, medical providers had planned to harvest the organs of 73 patients despite signs of neurological activity. Those procedures ultimately didn’t take place, but federal officials to overhaul the nation’s organ donation system.

“Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” Health and Human Services Secretary Robert F. Kennedy Jr. said in a statement. “The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.”

Even before this latest investigation, Black’s case showed Zohny that the organ donation system needed to improve. He was initially hesitant to talk to Ñî¹óåú´«Ã½Ò•îl Health News when contacted in July about Black. But Zohny said his patient’s story had stuck with him for years, highlighting that while organ donation must continue, little is understood about human consciousness. And determining when someone is dead is the critical but confusing question at play.

“There was no bad guy in this. It was a bad setup. There’s a problem in the system,” he said. “We need to look at the policies and make some adjustments to them to make sure that we’re doing organ donation for the right person at the right time in the right place, with the right specialists involved.”

LJ Punch, a former trauma surgeon who was not involved with the case but reviewed Black’s medical records for Ñî¹óåú´«Ã½Ò•îl Health News, questioned whether Black’s injury — from gunfire — possibly contributed to how he was treated. Young Black men like Larry Black are in the United States, and research on such violence is scant. His experience exemplifies “the general neglect” of Black men’s bodies, Punch said.

“That’s what comes up for me,” Punch said. “Structurally, not individually. Not any one doctor, not any one nurse, not any one team. It’s a structural reality.”

The hospital declined to comment on the details of Black’s case. SSM Health’s Kim Henrichsen, president of Saint Louis University Hospital and St. Mary’s Hospital-St. Louis, said the hospital system approaches “all situations involving critical illness or end-of-life care with deep compassion and respect.”

Mid-America Transplant, the federally designated organ procurement organization serving the St. Louis region, does not comment on individual donor cases, according to , executive vice president for organ procurement. She did tell Ñî¹óåú´«Ã½Ò•îl Health News that her organization has walked away from cases when patients’ conditions change — though not as late as when they are in the operating room for harvesting.

“Let me be clear about that. It happens way before then,” she said. “It definitely happens multiple times a year where we get consent. The family has made the decision, we approach, we get consent, it’s all appropriate, and then a day or so later they improve and we’re like, ‘Whoa.’”

But Speir said the recent media stories about the nation’s donation system are prompting a lot of questions about a process that also does a lot of good.

“We’re losing public trust right now,” Speir said of the industry. “And we’re going to have to regain that.”

Blink Twice for a Chance at Life

It was a Sunday afternoon when gunshots rang out in downtown St. Louis. Black had been on his way to his sister’s apartment.

“I didn’t know I was shot at first,” Black said, sitting in his living room six years later. “I literally ran like a block or two away.”

He collapsed moments later, he said, crawling to the back door of a woman’s home, where he asked for help. He said he asked the woman to give him two large towels, one covered in rubbing alcohol and another soaked with hydrogen peroxide. He wrapped those towels around the back of his head.

When his sister Macquel Payne found him, he was lying on the ground near the leasing office of her apartment complex, a crowd gathered around him.

Before an ambulance took him to the hospital, Black told his sister not to worry about him.

“I’m hearing Larry say, ‘I’m good, sis,’” Payne recalled. “‘I’m OK.’”

Black said he went in and out of consciousness on the way to the hospital and once he was there.

“I got to hitting my hand on the side of the ICU bed,” Black said. “They was like: ‘That’s just the reaction, the side effects of the medicine. Ask him some questions.’”

Payne said she asked her brother to blink twice if he could remember his first pet, a dog named “Little Black” that looked like the Chihuahua from the Taco Bell commercials.

Black said he remembers blinking twice. His sisters remember the same.

Payne asked him another question. This time she wanted to know whether her brother recognized their family. Black said he blinked twice when he saw his mom and sister standing nearby.  

Black said his sister then asked him “the main question” that everyone needed him to answer.

“She’s like, ‘If you want them to pull a plug, if you tired and you giving up, blink once,’” Black recalled. “‘If you still got some fight in you, blink more than once.’”

Black said he started blinking and hit the bed to let his family know that he was still with them.

The sisters said hospital staffers told them the movements were involuntary.

‘Not Right Now’

In a waiting room steps away from the hospital’s intensive care unit, a woman carrying brochures explained to Payne and the rest of the family that Black had identified himself as a possible organ donor on his ID.

The woman wanted to know whether the family wished to move forward with the process if Black died, Payne said.

“I remember my mom saying, ‘Not right now,’” Black’s sister recalled. “‘It’s kind of too soon.’”

Payne said the woman persisted.

“She was like, ‘Well, can I at least leave you some brochures or something?’” Payne recalled. “Then my mom got a little agitated because it felt like she was being, like, pushy.”

The family was already acquainted with the organ donation process. In 2007, Black’s teenage brother Miguel Payne drowned at a local lake. His organs were donated, Macquel Payne said, noting the family was told that his body parts and tissues helped multiple people.

“I believe in saving lives,” Payne said. “But don’t be pushy about it.”

Mid-America Transplant handles the organ transplant process for 84 counties in parts of Illinois, Arkansas, and Missouri, including St. Louis. Like the Kentucky organization, it is one of 55 federally designated nonprofits that facilitate organ donations throughout the country.

The nonprofit has never pressured a family into organ donation, Speir said. Registering to be an organ donor is legally binding, she said, but Mid-America has walked away from cases when families didn’t want to move forward.

She said her staff tries to dispel myths about organ donation and alleviate concerns. “We want to have the families leave with a positive experience,” Speir said.

Despite the family’s initial ambivalence, they ultimately consented to moving forward with donating Black’s organs. Watts said members of her brother’s care team had told the family that her brother was at “the end of the road.”

The family was told to prepare for Black’s “last walk of life,” Payne said. Also known as an honor or hero’s walk, the tradition honors the life of an organ donor before the harvesting process begins.

At the time, Payne said, she thought her brother still had a fighting chance. She asked the hospital staffers to take another look at him before he was wheeled down the hall.

“I’m like, ‘My brother’s in there tapping on the bed,’” Payne said. “They said, ‘That’s just his nerves.’ But I’m like, ‘No, something’s not right.’ It’s like he was too alert. He was letting us know: ‘Please don’t let them do this to me. I’m here. I can fight this.’ They were saying that’s what the medicine will do, it affects his nerves.”

After the family had agreed to move forward with the organ donation process, the two sisters said, an especially helpful member of Black’s medical team no longer treated them the same way. She became standoffish, they said.

“You could tell the dynamics had changed,” Watts said.

‘#¸é±õ±Ê²Ñ²âµþ°ù´Ç³Ù³ó±ð°ù’

The family put on blue jumpers for the walk of life. “We just walked around the floor, and everybody was, like, acknowledging him,” Payne said. “We just thought this was the end.”

A friend Black went to high school with filmed part of the ritual. In a , Black is seen being wheeled on a stretcher down a hallway in the hospital. His eyes are half-open. People are crying.

False rumors then started to swirl outside the hospital.

Brianna Floyd said she went into shock when she heard that her friend was dead. She knew that Black had been shot in the head. But a few days earlier, that he was in stable condition.

Floyd checked Facebook to see whether the news of his death was true. Her timeline was flooded with farewell posts for Black, so she decided to write one, too.

“I Love You So Much Brother,” . “#RIPMyBrother. Never Thought I Would Say That.”

Black’s father rushed to the hospital when he heard a rumor that his son was being wheeled to the morgue.

“‘He’s gone,’” Lawrence Black Sr. recalled being told. “‘He’s going to the freezer now.’”

Black Sr. said he refused to believe that his son was dead. The thought was devastating. He had already experienced that kind of loss to gun violence.

“You wake up and nothing’s the same,” Black Sr. said. “The spirit is lingering for about a week, and you can feel it, you know?”

Overwhelmed with emotion, he prayed for his son to live.

‘I Can’t Kill Your Son’

Zohny, the neurosurgeon, said he heard an announcement about a “hero’s walk” over a loudspeaker in the hospital. He wasn’t familiar with the term, so he asked about it. Medical residents in the hospital explained and told Zohny that the walk was possibly for his patient Larry Black.

“No, that can’t be my patient,” Zohny said he told them. “I didn’t agree.”

That’s when Zohny called the ICU to check on Black’s status. A person who answered the phone told him that Black was being wheeled to an operating room, he said.

“This is my first year,” Zohny said. “Your first year out as a neurosurgeon is the riskiest time for you. Any mistakes, anything small, basically derails your career. So the moment this happened, my legs went weak and I was very nervous because, at the end of the day, your job as a doctor is to be perfect.”

Ñî¹óåú´«Ã½Ò•îl Health News, Zohny, and Punch all reviewed the medical files given to Black from his hospitalization. It’s not clear from the records what led to that moment.

“In every case, the patient must be declared legally dead by the hospital’s medical team before organ procurement begins. This is not negotiable,” Mid-America Transplant’s CEO and president, Kevin Lee, wrote in on the nonprofit’s website, responding to the news and federal comments about the investigation centered in Kentucky. “Mid-America Transplant strictly follows all laws, regulations, and hospital protocols throughout the process.”

He said in a statement to Ñî¹óåú´«Ã½Ò•îl Health News that a person can be pronounced dead in two ways. A person is legally dead if their heart stops beating and they stop breathing, which is when donation after cardiac death can occur. A person can also become an organ donor if their brain, including the brain stem, has irreversibly ceased functioning, which is when brain death donation can occur.

“Every hospital has their own process in declaring both types of death,” Speir said in a statement. “Mid-America Transplant ensures hospitals follow their policies.”

But Black didn’t fall into either category, Zohny said. And, he said, Black hadn’t had what is known as a brain death exam.

Zohny said he immediately informed his chairman about the situation, then started running to the operating room. Black’s family was waiting in the hallway, unaware of the drama happening behind a set of closed silver doors.

Then Zohny emerged, pulling Black’s family into an empty operating room that was nearby.

“I remember he told my mama, ‘I can’t kill your son,’” Payne recalled. “She said, ‘Excuse me?’”

Zohny put an image of Black’s brain on a screen. Then he circled the part of his brain that was damaged. He explained that Black’s gunshot wound was something that he could possibly recover from, though he might need therapy. He asked the family whether they were willing to give Black more time to heal from the injury, instead of withdrawing care.

“In my opinion, no family would ever consent to organ donation unless they were given an impression that their family member had a very poor prognosis,” Zohny said. “I never had a conversation with the family about the prognosis, because it was too early to have that discussion.”

Zohny knew that he was taking a professional risk when he ran into the operating room.

“The worst-case scenario for me is that I lose my job,” he recalled thinking. “Worst-case scenario for him, he wrongfully loses his life.”

Later, Zohny said, a hospital worker who transported Black from the ICU to the operating room told Zohny that something had seemed off.

 “I remember him looking at me and saying, ‘I’m so glad you stopped that,’” Zohny recalled. “And I said, ‘Why?’ And he said: ‘I don’t know. His eyes were open the whole time, and I just felt like he was looking at me. His eyes didn’t move, but it felt like he was looking at me.’”

‘Back From the Dead’

After Zohny’s intervention, Black was wheeled back to the ICU. Zohny said the medical team held back all medications that caused his sedation.

Black woke up two days later, Zohny said, and started speaking. Within a week, the neurosurgeon said, he was standing.

“I had to learn how to walk, how to spell, read,” Black said. “I had to learn my name again, my Social, birthday, everything.”

Zohny continued to care for Black during what remained of his 21 days in the hospital. During a follow-up appointment, he posed for a photo with Black and his older sister, Watts. Next to Zohny, Black is standing up, a brace on his leg.

“It’s a miracle that despite flawed policy we were able to save his life,” Zohny said. “It was an absolute miracle.”

Zohny, who was working as a fellow and assistant professor at the time, left Saint Louis University Hospital for another job later that year when his fellowship ended. He said Black’s story made him question what we know about consciousness.

He’s now working on a new method that quantifies consciousness. Zohny said it could possibly be used to help measure consciousness from brain signals, such as with an electroencephalogram, or EEG, a test that measures electrical activity in the brain. Zohny said his method still needs rigorous validation, so he recently started a medical research company called Zeta Analytica, separate from his work at the West Virginia University , which he’ll begin in October.

“We don’t understand the brain to the level that we should, especially with all of the technology we have now,” Zohny said.

Today, Black is trying to move forward. He said he has seizures if the bullet fragments in his head move around too much. He said he easily overheats because of the injury.

He doesn’t blame his family for their decision. But he questions the organ transplantation process. “It’s like they choose people’s destiny for them just because they have an organ donor ribbon on their ID,” Black said. “And that’s not cool.”

To help him process everything that happened to him in 2019, he makes music under the name BeamNavyLooney. “I am back from the dead,” he recently wrote in a song about his experience.

Earlier this year, Black celebrated the birth of another son, who was sleeping peacefully at home as Black recounted his story.

“He doesn’t really cry,” Black said. “He just makes noises.”

Black sat with a firearm within reach. He said he keeps the gun close to protect his family. It’s still hard for him to sleep at night. Nightmares about what happened — both on the street and in the hospital — keep him awake.

He said he no longer wants to be on the organ donor registry.

This project was supported by a fellowship from the Association of Health Care Journalists, with funding from The Joyce Foundation.

This <a target="_blank" href="/news/organ-donation-transplant-harvesting-still-alive-missouri-st-louis/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Even Chloë, who was in kindergarten, had a good understanding of how things would go that day. Before the procedure, a hospital worker gave her a coloring book that explained the steps of the surgery — a procedure to correct a condition that could have eventually interfered with her vision.

“Chloë is very smart,” Jones said. “She reads at almost a third-grade level now, and she’s only 6.”

Jones did her homework, too. With no pediatric ophthalmologists near their home in Wentzville, Missouri, who would take their insurance, she asked the insurer to cover Chloë’s out-of-network care as if it were in-network. The insurer agreed to let her see an out-of-network specialist.

Chloë made it through surgery without a hitch. Jones said her daughter enjoyed a few popsicles at the hospital before going home.

“ I slept with her every night because she was so worried she would wake up and not be able to see,” she said. “But it healed beautifully, and she was absolutely ready to go back to school.”

Then the bill came. 

The Medical Procedure

Chloë was born with a droopy left eyelid, a condition known as ptosis. To correct the problem, an ophthalmologist surgically lifts the eyelid, preventing it from disrupting the patient’s line of sight.

Ophthalmologists, unlike optometrists and opticians, hold medical degrees and can provide advanced eye care, including surgery.

The Final Bill

$15,188, including $10,382 for the procedure and $2,730 for anesthesia. Initially, insurance paid just $1,775.79, leaving the Jones family owing $13,412.21 — until Chloë’s uncle, who had recently finished his term as a state senator, asked a colleague to look into it.

The Problem: Phantom Insurance Approval?

Months before Chloë inhaled bubblegum-scented anesthetic at Cardinal Glennon Children’s Hospital in St. Louis, Jones discovered that it can be hard to find a pediatric ophthalmologist. The doctor recommended by Chloë’s pediatrician wasn’t contracted with their insurer, UnitedHealthcare, and the closest in-network specialist was in Wisconsin, hundreds of miles away.

So Jones requested what’s called a network gap exception, under which the insurer would cover the recommended doctor’s services as in-network.

Before the surgery was scheduled, she received a letter saying UnitedHealthcare had approved her request “because currently there isn’t a doctor, health care professional, or facility in your area to provide these services.” The letter listed several medical billing codes for eye services and said they would be covered “at the network level.”

About a week later, the insurer sent a prior authorization letter approving Chloë’s surgery.

But UnitedHealthcare declined to pay most of the surgery bill, covering it as out-of-network. With approval letters in hand, Jones said, she did not understand why the insurer apparently was not honoring its agreement to cover her daughter’s treatment.

In fact, the similar-looking letters granted different kinds of approval.

UnitedHealthcare’s gap exception approved Chloë’s exams before the surgery as in-network. But in its prior authorization letter for her surgery with the same doctor, the insurer said only that it would cover it — without offering network discounts.

After receiving the bill, Jones contacted the insurer online, but she said a representative told her there was no record of its approval to cover the surgery as in-network.

“At that point, I didn’t even know what to do,” she said. “I’m like, ‘This is crazy.’”

She said she sent over a copy of one of the approval letters, which was on the company’s letterhead, but a representative told her the letter hadn’t come from UnitedHealthcare.

“They said, ‘You saw this surgeon, they’re not covered and you didn’t have permission, so, no, we’re not going to pay,’” Jones said, recounting the phone call.

An insurance representative told Jones she owed more than $13,000 because of “a balance billing issue.” That meant the Jones family would have to pay the $13,000-plus balance.

Spokespeople for UnitedHealthcare confirmed the company provided a gap exception and prior authorization for Chloë’s care. Eric Hausman, a spokesperson for UnitedHealth Group, said in a statement to Ñî¹óåú´«Ã½Ò•îl Health News that “we empathize with anyone who finds themselves in the unfortunate situation of being balance billed by an out-of-network provider for an amount significantly above market rates, and without any advance knowledge.”

Maryanne Wallace, a spokesperson for SSM Health, the health system that includes Cardinal Glennon Children’s Hospital, provided a statement that said SSM followed “standard patient billing procedures.”

“Occasionally, an insurance company may process a claim as an out-of-network service, which can result in a balance being billed to the patient,” the statement said.

The Resolution

Jones said she was blindsided by the big bill. She tried to fix the problem on her own, she said, keeping track of every interaction with the insurer and the hospital. She filed appeals with UnitedHealthcare.

Nothing helped — until she reached out to her brother Caleb Rowden, who had been a Missouri state senator for eight years after serving four years in the state House.

“ I’ve never used my brother’s political clout for anything,” she said. “I actually hate politics.”

Rowden told Ñî¹óåú´«Ã½Ò•îl Health News that he reached out to Travis Fitzwater, the state senator representing his niece’s district. Jones contacted Fitzwater’s office, too, and sent a complaint to Missouri Attorney General Andrew Bailey.

Fitzwater said his office did no more for Chloë than it would for any constituent.

“We’re not going to take a lot of credit for the result of it, because we didn’t ask for anything other than a resolution, so that everybody can be at peace and move on with their lives,” he said in an interview. “We just did what we do every day.”

After Fitzwater’s staff contacted the hospital and the insurer, representatives from both separately called Jones and notified her that UnitedHealthcare had paid the bill in full.

In the end, Chloë’s family paid nothing for her procedure — not even a copay.

The Takeaway

When it comes to insurance approvals, read the fine print carefully; “covered” does not mean an insurer will pay, let alone at in-network rates.

Rowden and Fitzwater said reaching out to your elected representative’s office can help. Advocating for constituents is part of their job.

“They usually have an open line of communication with these insurance companies and hospitals,” Rowden wrote in an email. “They may not always be able to get to a positive outcome since every situation is a little different, but they can usually get you to a next step.”

Jones is grateful that her brother was able to help, though she acknowledged that she probably would not have called him without a nudge from their mother. “I think I would still be fighting,” she said.

Bill of the Month is a crowdsourced investigation by Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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