Health insurers limit coverage of prosthetic limbs, question their medical necessity

by Michelle Andrews

KHN - When Michael Adams was researching health insurance options in 2023, he had one very specific requirement: coverage for prosthetic limbs.

Adams, 51, lost his right leg to cancer 40 years ago, and he has worn out more legs than he can count. He picked a gold plan on the Colorado health insurance marketplace that covered prosthetics, including microprocessor-controlled knees like the one he has used for many years. That function adds stability and helps prevent falls.

Prosthetic coverage by private health plans varies tremendously. Even though coverage for basic prostheses may be included in a plan, many insurance companies will cap payouts for devices and impose restrictions on the types of devices approved.

Photo: ThisisEngineering/Unsplash


But when his leg needed replacing last January after about five years of everyday use, his new marketplace health plan wouldn’t authorize it. The roughly $50,000 leg with the electronically controlled knee wasn’t medically necessary, the insurer said, even though Colorado law leaves that determination up to the patient’s doctor, and his has prescribed a version of that leg for many years, starting when he had employer-sponsored coverage.

“The electronic prosthetic knee is life-changing,” said Adams, who lives in Lafayette, Colorado, with his wife and two kids. Without it, “it would be like going back to having a wooden leg like I did when I was a kid.” The microprocessor in the knee responds to different surfaces and inclines, stiffening up if it detects movement that indicates its user is falling.

People who need surgery to replace a joint typically don’t encounter similar coverage roadblocks. In 2021, 1.5 million knee or hip joint replacements were performed in United States hospitals and hospital-owned ambulatory facilities, according to the federal Agency for Healthcare Research and Quality, or AHRQ. The median price for a total hip or knee replacement without complications at top orthopedic hospitals was just over $68,000 in 2020, according to one analysis, though health plans often negotiate lower rates.

To people in the amputee community, the coverage disparity amounts to discrimination.


Fewer than half of people with limb loss have been prescribed a prosthesis

“Insurance covers a knee replacement if it’s covered with skin, but if it’s covered with plastic, it’s not going to cover it,” said Jeffrey Cain, a family physician and former chair of the board of the Amputee Coalition, an advocacy group. Cain wears two prosthetic legs, having lost his after an airplane accident nearly 30 years ago.

AHIP, a trade group for health plans, said health plans generally provide coverage when the prosthetic is determined to be medically necessary, such as to replace a body part or function for walking and day-to-day activity. In practice, though, prosthetic coverage by private health plans varies tremendously, said Ashlie White, chief strategy and programs officer at the Amputee Coalition. Even though coverage for basic prostheses may be included in a plan, “often insurance companies will put caps on the devices and restrictions on the types of devices approved,” White said.

An estimated 2.3 million people are living with limb loss in the U.S., according to an analysis by Avalere, a health care consulting company. That number is expected to as much as double in coming years as people age and a growing number lose limbs to diabetes, trauma, and other medical problems.

Fewer than half of people with limb loss have been prescribed a prosthesis, according to a report by the AHRQ. Plans may deny coverage for prosthetic limbs by claiming they aren’t medically necessary or are experimental devices, even though microprocessor-controlled knees like Adams’ have been in use for decades.

Cain was instrumental in getting passed a 2000 Colorado law that requires insurers to cover prosthetic arms and legs at parity with Medicare, which requires coverage with a 20% coinsurance payment. Since that measure was enacted, about half of states have passed “insurance fairness” laws that require prosthetic coverage on par with other covered medical services in a plan or laws that require coverage of prostheses that enable people to do sports. But these laws apply only to plans regulated by the state. Over half of people with private coverage are in plans not governed by state law.

The Medicare program’s 80% coverage of prosthetic limbs mirrors its coverage for other services. Still, an October report by the Government Accountability Office found that only 30% of beneficiaries who lost a limb in 2016 received a prosthesis in the following three years.

Cost is a factor for many people.

“No matter your coverage, most people have to pay something on that device,” White said. As a result, “many people will be on a payment plan for their device,” she said. Some may take out loans.


Working with her doctor, she has appealed the decision to her insurer and been denied three times.

The federal Consumer Financial Protection Bureau has proposed a rule that would prohibit lenders from repossessing medical devices such as wheelchairs and prosthetic limbs if people can’t repay their loans.

“It is a replacement limb,” said White, whose organization has heard of several cases in which lenders have repossessed wheelchairs or prostheses. Repossession is “literally a punishment to the individual.”

Adams ultimately owed a coinsurance payment of about $4,000 for his new leg, which reflected his portion of the insurer’s negotiated rate for the knee and foot portion of the leg but did not include the costly part that fits around his stump, which didn’t need replacing. The insurer approved the prosthetic leg on appeal, claiming it had made an administrative error, Adams said.

“We’re fortunate that we’re able to afford that 20%,” said Adams, who is a self-employed leadership consultant.

Leah Kaplan doesn’t have that financial flexibility. Born without a left hand, she did not have a prosthetic limb until a few years ago.

Growing up, “I didn’t want more reasons to be stared at,” said Kaplan, 32, of her decision not to use a prosthesis. A few years ago, the cycling enthusiast got a prosthetic hand specially designed for use with her bike. That device was covered under the health plan she has through her county government job in Spokane, Washington, helping developmentally disabled people transition from school to work.

But when she tried to get approval for a prosthetic hand to use for everyday activities, her health plan turned her down. The myoelectric hand she requested would respond to electrical impulses in her arm that would move the hand to perform certain actions. Without insurance coverage, the hand would cost her just over $46,000, which she said she can’t afford.

Working with her doctor, she has appealed the decision to her insurer and been denied three times. Kaplan said she’s still not sure exactly what the rationale is, except that the insurer has questioned the medical necessity of the prosthetic hand. The next step is to file an appeal with an independent review organization certified by the state insurance commissioner’s office.

A prosthetic hand is not a luxury device, Kaplan said. The prosthetic clinic has ordered the hand and made the customized socket that will fit around the end of her arm. But until insurance coverage is sorted out, she can’t use it.

At this point she feels defeated. “I’ve been waiting for this for so long,” Kaplan said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This article first appeared on KFF Health News and is republished here under a Creative Commons license.

Letter to the Editor |
Should Illinois legalize assisted-suicide?

Dear Editor,

Should Illinois legalize assisted-suicide? Some state senators think so. If allowed, vulnerable people who are sick, elderly, disabled, and those with mental illness and dementia will become targets.

As the father of a Downs Syndrome toddler, I am extremely alarmed by this proposal.

No one should be comfortable with promoting a cheaper, easier alternative to life’s struggles in order to ignore their responsibilities to people who need their help.

Canada’s law, with 79% support, was promoted as a last resort for the terminally ill. Support has plummeted to 30% because of the disregard toward vulnerable citizens such as anyone with an illness and those who are disabled.

Canadians facing homelessness and poverty are feeling compelled to end their lives rather than be a “burden” to society.

In 2023, 76.2% of Belgium euthanasia was administered to people with physical and psychological issues, including personality disorders, depression, and Alzheimer’s.

A Netherland law that took effect on February 1, 2024, allows parents to euthanize their children even if the child doesn’t want to be killed.

Proponents can call it “dignity,” but it is cruel and heartless to disregard human life.

If you agree, please let your state senator know.


David E. Smith, Executive Director
Illinois Family Institute


Viewpoint |
Kamala Harris’ and Donald Trump’s records on abortion policy couldn’t be more different – here’s what actions they both have taken while in office

Rachel Rebouché, Temple University


Abortion is a critical, if not the most important, issue for many voters – especially women, according to polls – ahead of the U.S. presidential election in November.


Harris and Trump have starkly different track records on abortion.

Since Vice President Kamala Harris became the Democratic presidential nominee in August 2024, she has been vocal about her support for abortion rights. Specifically, she supports Congress passing a federal law that would protect abortion rights in the wake of the Supreme Court in 2022 overturning the landmark Roe v. Wade ruling, which recognized a constitutional right to abortion.

Republican presidential nominee Donald Trump, meanwhile, has boasted about nominating three Supreme Court justices who were among the court majority that voted in 2022 to abandon a constitutional right to abortion. However, in September 2024, Trump said he would not sign a federal abortion ban, reversing course from his previous statements. He also did not answer a question during the September presidential debate about whether he would veto legislation that bans abortion.

Harris and Trump have starkly different track records on abortion. As an academic, my scholarship focuses on reproductive health law, health care law and family law. In this piece, and in anticipation of the election, I briefly consider the broad strokes of each candidate’s past positions on and actions regarding abortion.

Harris’ abortion record

As California’s attorney general, Harris co-sponsored the Reproductive FACT Act, which, among other requirements, mandated that crisis pregnancy centers inform patients that they are not licensed medical facilities and that abortion services are available elsewhere. These centers are nonprofit organizations that counsel pregnant people against abortion, sometimes using deceptive tactics.

Anti-abortion groups sued to block the law once it went into effect. And, in 2018, the U.S. Supreme Court struck down the law on First Amendment grounds.


As a U.S. senator, Harris opposed anti-abortion bills that would have conferred personhood rights on fetuses.

In 2017, Harris investigated the tactics of undercover videographers at Planned Parenthood clinics who, through deception and fraud, sought to entrap clinicians into making controversial, though legal, statements, and who possibly contravened state law on secret recordings.

As a U.S. senator, Harris opposed anti-abortion bills that would have conferred personhood rights on fetuses. None of them ultimately passed.

Conversely, Harris championed various bills that would have protected and advanced reproductive rights. In 2019, for example, Harris was a co-sponsor of the Women’s Health Protection Act, which would have enacted a federal statutory right to abortion. It also did not pass.

Finally, during Harris’ tenure as vice president, the Biden administration has used its executive power to ease barriers to abortion access, primarily through federal agency actions. The Food and Drug Administration, for example, removed a rule in 2021 that prohibited mailing medication abortion.

The Department of Health and Human Services issued guidance affirming that federal law requires emergency rooms to perform an abortion when it is medically necessary to stabilize a patient needing urgent care.

The Biden-Harris administration also supported federal legislation that includes accommodations for abortion. The Pregnant Workers Fairness Act, enacted in 2023, requires employers to provide time off for a worker’s miscarriage, stillbirth or abortion.


Trump began his presidency in 2016 by promising to appoint Supreme Court justices who wouldoverturn Roe v. Wade.

Although the Biden-Harris administration’s abortion policy is not necessarily based on just the vice president, Harris, since Roe’s reversal, has been at the helm of the administration’s “Fight for Reproductive Freedoms” tour, speaking nationally in support of a right to abortion. Harris has also stressed the damage done in 14 states, in particular, where abortion is banned throughout pregnancy or after six weeks of gestation.

Trump’s abortion record

During Trump’s tenure as president, he supported various changes – in the form of judicial appointments, federal funding and agency actions, some led by anti-abortion federal employees – in the service of making it harder for people to gain access to abortion care.

Trump began his presidency in 2016 by promising to appoint Supreme Court justices who would overturn Roe v. Wade. He nominated three justices – Brett Kavanaugh, Amy Coney Barrett and Neil Gorsuch – who joined the majority opinion in Dobbs v. Jackson Women’s Health Organization, reversing Roe in June 2022.

The Senate confirmed 226 judges whom Trump nominated to the lower levels of federal courts. Trump’s nominations followed a campaign pledge in 2016 that he “would appoint pro-life judges.” Some were on record as being against abortion, and some believed that embryos should be treated like children.

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From the start, Trump’s administration prioritized defunding Planned Parenthood clinics, which offer abortion care and receive federal funding under the federal Title X program for other family planning services. Trump signed a bill in 2017 to allow states to strip funding from Planned Parenthood clinics and other organizations that offer abortion, even though abortion care was not supported by the Title X funding.

The Trump administration unsuccessfully tried to replace the Affordable Care Act and undermine its coverage for contraceptives as well as its neutral stance on insurance coverage for abortion. Trump supported bills such as the never-passed American Health Care Act to limit abortion coverage in private health insurance plans.

Trump also appointed several people with anti-abortion positions to his administration, including Charmaine Yoest, the former CEO for the anti-abortion group Americans United for Life, who served as a top communications official at the Department of Health and Human Services.

The Trump administration advanced numerous other anti-abortion policies. For instance, the Department of Human and Health Services’ 2017 strategic plan defined life as beginning at conception – a decision that supported funding for crisis pregnancy centers and abstinence-only education programs.

Finally, the Trump administration adopted an anti-abortion approach when it came to foreign policy. Trump reinstated and expanded the Mexico City Policy, also known as the Global Gag Rule, which prohibits foreign nongovernmental organizations that receive U.S. funding from performing abortions or referring patients for abortion care elsewhere. Under the Mexico City Policy, Trump in 2017 removed US$8.8 billion in U.S. foreign aid for overseas programs that provide or refer for abortions.

In 2017, Trump also suspended U.S. funding to the United Nations Population Fund, an agency focused on family planning for low-income people around the world, among other issues, which does “not promote abortion” but “supports the right of all women to get post-abortion care.” Biden restored funding to the U.N. agency in 2021.

In the coming weeks, both candidates will have a lot to say about abortion, possibly refining or changing their stances on aspects of abortion law. In assessing what both candidates have to say about how their administration will approach abortion, voters might consider what we know about their past actions.


The Conversation About the author:
Rachel Rebouché is a Professor of Law at Temple University. This article is republished from The Conversation under a Creative Commons license. Read the original article.

August is National Breastfeeding Month

Newborn and mother resting
Photo: Samuel Lee/Pixabay

by Sentinel News Service
CHAMPAIGN - Every August, communities across the United States come together to celebrate National Breastfeeding Month, a time dedicated to promoting the benefits and importance of breastfeeding. This month-long observance aims to raise awareness, provide education, and encourage support for breastfeeding mothers and their families.

In conjunction with National Breastfeeding Month, the Champaign-Urbana Public Health District (CUPHD) announced its third annual breastfeeding supplies drive. Building upon their past success the drive will take place during the entire month of August.

Mom holding a baby
Sarah Chai/PEXELS
The donated supplies will be given to parents enrolled in the WIC Breastfeeding Peer Counselor Program. This program offers support to expectant and postpartum parents, helping them learn about breastfeeding and overcome any obstacles they may encounter in achieving their individual breastfeeding goals.

The WIC program's mission is to safeguard the health of low-income pregnant women, new mothers, breastfeeding women, infants, and children up to age five who are at nutritional risk. It provides nutritious food to improve diets, offers education on healthy eating and breastfeeding, and connects participants to healthcare services.

National Breastfeeding Month was established in 2011 by the United States Breastfeeding Committee (USBC) to align with World Breastfeeding Week, which takes place during the first week of August. The initiative was created to bring greater attention to breastfeeding as a key component of public health and to advocate for policies that support breastfeeding mothers. The month-long celebration serves as a platform to highlight the critical role that breastfeeding plays in the health and well-being of both mothers and infants.

Breastfeeding provides numerous benefits for both mothers and their babies. For infants, breast milk is a complete source of nutrition that contains antibodies, enzymes, and hormones crucial for their development. It helps protect against infections, reduces the risk of chronic conditions, and promotes a healthy weight. For mothers, breastfeeding can lower the risk of certain cancers, aid in postpartum recovery, and strengthen the bond with their baby. Additionally, breastfeeding has economic benefits, reducing the need for formula and healthcare costs associated with treating illnesses.

Through the breastfeeding supplies drive, CUPHD hopes to support WIC families by providing them with the supplies they need to breastfeed longer to meet their breastfeeding goals and improve their infant's health.

Items needed include nursing pads, pillows, and covers; breast milk storage bags; electric and manual breast pumps; and breast pump accessories. All items must be received new and sealed in their original packaging.

Photo: Brytny.com/Unsplash

National Breastfeeding Month is a vital initiative that brings attention to the importance of breastfeeding for maternal and infant health. By participating in this celebration, individuals and organizations can help create a supportive environment that empowers mothers and promotes the well-being of future generations.

A curated Amazon wish list is available for virtual donations. Donated items will be sent directly to CUPHD to distribute to clients enrolled in the Breastfeeding Peer Counselor program.  Donations from this list can be made year-round. 

Products can also be donated in person at CUPHD, August 1-31, at the WIC intake window inside the CUPHD main lobby.  

Ways to donate:

Online: Amazon wish list
The wish list will remain open year-round, 24/7.

In-person:

  • CUPHD Champaign WIC desk (201 West Kenyon Road, Champaign): Monday through Friday, 8:30 a.m.—noon, 1:00 p.m.—4:30 p.m.
  • CUPHD Rantoul WIC desk (520 East Wabash Avenue, #2, Rantoul): Tuesday, Wednesday, and Friday, 8:30 a.m.—noon, 1:00 p.m.—4:30 p.m.
  • Orchard Downs clinic (2040 South Orchard Street, Unit 2040-A, Urbana): Thursday, 8:30 a.m.—noon, 1:00 p.m.—4:30 p.m.

Urbana Farmers Market WIC booth
Saturday, August 24, 7:00 a.m.—noon
Come celebrate National Breastfeeding Month with breastfeeding-related games, giveaways, information about WIC and breastfeeding laws, and more!


Commentary |

Project 2025's plan to do away with Medicad and Medicare

Fernando Zhiminaicela/Pixabay


While admitting that Medicare and Medicaid “help many,” the authors of Project 2025 nonetheless declare that the programs “operate as runaway entitlements that stifle medical innovation,


by Sonali Kolhatkar



Conservatives have done the United States a huge favor by explaining in detail what they’ll try to do if Donald Trump is reelected.

Project 2025, a “presidential transition project” of the Heritage Foundation, helpfully lays out how a group of former Trump officials would like to transform the country into a right-wing dystopia where the rich thrive and the rest of us die aspiring to be rich. 

Declaring in its Mandate for Leadership that “unaccountable federal spending is the secret lifeblood of the Great Awokening” (really!), the plan focuses heavily on reversing social progress on the rights of racial and sexual minorities. 

It also promises to decimate the most popular benefits programs in the U.S.: Medicare and Medicaid. 

In a section dedicated to the Department of Health and Human Services, Project 2025 declares that “HHS is home to Medicare and Medicaid, the principal drivers of our $31 trillion national debt.” 

This is a popular conservative framing used to justify ending social programs. In fact, per person Medicare spending has plateaued for more than a decade and represents one of the greatest reductions to the federal debt.

While admitting that Medicare and Medicaid “help many,” the authors of Project 2025 nonetheless declare that the programs “operate as runaway entitlements that stifle medical innovation, encourage fraud, and impede cost containment, in addition to which their fiscal future is in peril.” 

To solve these imaginary problems, they suggest making “Medicare Advantage the default enrollment option” rather than traditional Medicare.

But Medicare Advantage (MA) is not a government-run healthcare program. It’s merely a way to turn tax dollars into profits for private health insurers. The more that MA providers deny coverage, the more money their shareholders make. There is no incentive for them to cover the health care needs of seniors.

There is plenty of evidence that MA programs not only fleece taxpayers by submitting inflated reimbursement bills to the government but also routinely deny necessary medical coverage. 

In other words, they’re drinking out of both sides of the government trough.

The Center for Economic and Policy Research pointed out in a March 2024 paper that the “insurance companies that run these MA plans spend significant sums of money to blanket seniors with marketing” while relying on “heavily restricted networks that damage one’s choice of provider along with dangerous delays and denials of necessary care.”

But Project 2025 claims, without evidence, that “the MA program has been registering consistently high marks for superior performance in delivering high-quality care.” 

Medicaid, the government program that covers health care for the lowest-income Americans, including millions of children, is also a major target of the conservative authors.

They want to add work requirements to the benefit, adopting the familiar conservative trope of low-income Americans living off tax dollars because they’re too lazy to work. And like the MA programs, they want to allow private insurers to get in on the game.

Calling Medicaid a “cumbersome, complicated, and unaffordable burden on nearly every state,” Project 2025 complains about the program’s increased eligibility while at the same time claiming to care about how it impacts “those who are most in need.”

But a June 2024 report by the Center on Budget and Policy Priorities concludes that Medicaid’s expanded eligibility rules have helped insure millions of Americans who would otherwise be uninsured and saved money in state budgets. 

Most encouragingly, “the people who gained coverage have grown healthier and more financially secure, while long-standing racial inequities in health outcomes, coverage, and access to care have shrunk.” 

Project 2025 claims to have the underlying ideology to “incentivize personal responsibility,” as if its authors simply want Americans to begin acting like responsible grownups. But they mysteriously don’t apply this same standard to wealthy elites — perhaps because that’s precisely who they are.


Sonali Kolhatkar is the host of “Rising Up With Sonali,” a television and radio show on Free Speech TV and Pacifica stations. This commentary was produced by the Economy for All project at the Independent Media Institute and adapted for syndication by OtherWords.org.

Read our latest health and medical news

Not in your head; protecting yourself from lazy medical diagnoses

doctor and patient

RDNE Stock Project/PEXELS

by Julie Rehmeyer

You’re a doctor. You have fifteen minutes with your patient, who cries as she ticks off a laundry list of vague symptoms. Depression is very common, you think, and it could explain all of those symptoms. Do you diagnose the patient with depression, noting it in her medical record, or do you begin an expensive, time-consuming investigation?

Now, replay the scenario from the patient’s perspective. You’re Elke Martinez, a veterinary technician, and you’ve developed muscle and joint pain, headaches, fatigue, and gastrointestinal problems. You go to your primary care doctor, part of the Kaiser Permanente healthcare system, and he attributes your symptoms to depression and anxiety. You know that’s not right, since you’re already being treated for those issues, and the treatment works. What do you do?

What Martinez did was humor her doctor. She attended Kaiser’s group cognitive behavioral therapy classes. The classes didn’t improve any of her symptoms, but they did consume a lot of her time and energy. Meanwhile, she saw more doctors to try to figure out what was actually wrong, but every Kaiser-affiliated doctor asked her about the psychiatric diagnosis already in her chart. “You can see on their face that they’re already checked out,” she says. These experiences undermined not only her trust in her doctors, but also in herself: “You get told this enough and you start to believe it and doubt yourself.”

Your odds of having an experience similar to Martinez’s are shockingly high. A 2017 meta-analysis published in The Lancet showed that for every 100 patients seen in primary care, 15 of them will receive a misdiagnosis of depression.

The problem takes a particular toll on patients who are chronically ill. A 2014 survey by the Autoimmune Association found that 51 percent of patients with autoimmune disease report that they had been told that “their disease was imagined or they were overly concerned.” And a 2019 survey of 4,835 patients with postural orthostatic tachycardia syndrome found that before getting a correct diagnosis, 77 percent of them had a physician suggest their symptoms were psychological or psychiatric.

Incorrect psychiatric diagnoses in medical records can cause long-lasting havoc.

In our culture, aspersions against patients with poorly understood chronic illness still run deep. Just a few months ago in OpenMind, we covered longstanding efforts to label as head cases and confabulators individuals with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent symptoms of Lyme disease, and long covid. You can read it here.

Patients affected by rare disorders (those with fewer than 200,000 sufferers in the United States) also suffer enormously from this type of dismissal. According to the National Organization for Rare Diseases, if you initially receive a false psychiatric diagnosis, it takes you 2.5 to 14 times as long to get diagnosed compared to those who were never misdiagnosed, and between 1.25 and 7 times as long as those who received a false non-psychiatric diagnosis.

Even when a patient is in fact depressed or anxious, that might not be the correct explanation for their physical symptoms. The causation may go in the other direction: The patient might have a physical illness that’s causing their psychological distress. Lyme disease patients, for example, are often misdiagnosed as having depression, bipolar disorder, and more. Yet as a 2021 study pointed out, these patients are often depressed precisely because they are ill. Systemic, whole-body or brain infection can cause impaired sleep, attention, memory, and performance, all of which contribute to depression. Targeting those psychological symptoms without effectively treating the underlying infection will never work.

Psychological diagnoses are often the easiest ones for doctors to make, and the hardest ones for patients to shake. Once a psychological diagnosis is entered into a patient’s medical records, it becomes the starting place for every subsequent doctor who reads it. Patients may not even know the diagnosis is there, since they often don’t see their records (although they have a right to — see Tools for Readers, below).

Martinez realized that the only way she was going to get a proper diagnosis of her physical symptoms was by leaving the Kaiser system, so that she could go to a new set of doctors who couldn’t see the psychiatric misdiagnosis in her chart. Thirteen years after her symptoms started, she finally got an explanation: She has Ehlers-Danlos Syndrome, a disorder of the connective tissue that can cause devastating symptoms throughout the body. By the time she received a proper diagnosis, she was disabled and had to give up the career she loved in veterinary work. And she was luckier than many. On average, with a psychiatric misdiagnosis, it typically takes patients 22 years to get diagnosed with Ehlers-Danlos syndrome.

Photo: SHVETS Production/PEXELS

Incorrect psychiatric diagnoses in medical records can cause long-lasting havoc. When one U.S.-based patient I interviewed, who requested anonymity, was erroneously diagnosed with Munchausen’s syndrome — meaning that she was accused of fabricating her illness — she became unable to get medication for her severe pain for several months, while her therapist worked to persuade the psychologist who diagnosed her to remove it from her chart. In the meantime, she resorted to taking large doses of Ibuprofen, which resulted in a stomach ulcer.

Another patient that I interviewed, also in the U.S., told me that her exhaustion led to a diagnosis of depression while she was a medical resident, even though her low energy was sufficiently explained by her autoimmune disease. When she received her medical license, it came with conditions. Due to her diagnosis of mental illness, she was required to receive a high level of supervision, making it impossible for her to practice.

Yet another patient I spoke with lost the ability to digest food, weighing in at 85 pounds at 5’7”, but the local hospital wouldn’t admit her to the emergency room because her medical records diagnosed her problem as psychiatric. Since she lives in a remote area and is too ill to travel, she hasn’t been able to access medical care at all; last I heard, she had not gotten to the bottom of her digestive woes.

Even today, doctors routinely use the term “medically unexplained symptom” to imply a psychological origin for a patient’s physiological reports.

The problem of misdiagnosing physiological illness as psychological is particularly pernicious because it evokes the loaded and sexist aura of the old, discarded term "hysteria." Sigmund Freud claimed, without evidence, that unconscious traumatic memories can be converted into symbolically relevant physical symptoms. In so doing, he gave doctors permission to think of literally any symptom as having a psychological origin, even in the absence of psychological symptoms. This led to the term “conversion disorder,” which has multiplied into endless euphemisms designed to cover over its sexist origins, including somatization disorder, functional disorder, and bodily distress disorder. Specialists sometimes argue over fine distinctions between the terms, but fundamentally, they all imply that looking for physical causes for your symptoms will be fruitless and that you should instead address them psycho-behaviorally.

Even today, doctors routinely use the term “medically unexplained symptom” to imply a psychological origin for a patient’s physiological reports. In UpToDate, a highly respected online guide for evidence-based treatment, a search for “medically unexplained symptoms” reroutes to an entry on somatization in psychiatry. Both the language and the culture of modern medicine systematically nudge some doctors toward the assumption that ambiguous symptoms are psychosomatic; it is a culture we need to change. “As a matter of peculiar pro­fessional fact, there is no term that names diagnostic uncertainty without also naming psychological diagnosis,” bioethicist Diane O’Leary and health psychologist Keith Geraghty state in the Oxford Handbook of Psychotherapy Ethics.

Writing in The American Journal of Bioethics, philosopher Abraham Schwab at Clarkson University notes that psychological diagnoses may be incorrect either because the doctor doesn’t have the knowledge to come to the proper biomedical diagnosis or because the patient has a biological condition that is not yet understood by medical science. “As a result,” he says, “psychogenic diagnoses should carry with them low levels of confidence.”

In practice, though, a psychological diagnosis tends to override other interpretations, making it difficult for doctors to discover a medical explanation for the patient’s symptoms. That’s partly by design: Investigating undiagnosed medical conditions is expensive, and it often doesn’t lead to treatment that relieves the patient's symptoms. The widely used MacLeod’s Clinical Investigation Handbook cautions that “if [patients with medically unexplained symptoms] are not managed effectively, fruitless investigations and harm from unnecessary drugs and procedures may result.” Furthermore, a patient’s very determination to find a medical explanation can be dismissed as “doctor-shopping” and viewed as an indication of somatization.

Mental health professionals have historically resisted making records available to their patients.

Patients with erroneous psychological records face enormous obstacles since their doctors are discouraged from seeking out the physiological cause of their suffering and further complaints may be met with further suspicion. But there are ways to push back against these challenges, and the place to start is by accessing medical records — and then pushing to get errors fixed.

Mental health professionals have historically resisted making records available to their patients. Common justifications are that patients suffering delusions will become hostile if told in records that their beliefs aren’t correct, or that clinicians will hold back in their note-taking because they’re worried about the reaction of the patient. But some other professionals have argued for encouraging patients to review records, writing in the Journal of the American Medical Association: “The clinician who actively solicits open and ongoing dialogue, including a patient’s opinion about a note’s accuracy, may enhance both clinical precision and the treatment relationship.”

Since 1996 the Health Insurance Portability and Accountability Act (HIPAA) has given patients a legal right to access their medical records. Starting in October of 2022, the 21st Century Cures Act made it easier to do so. In particular, the Act requires that healthcare providers provide patients access to all the health information in their electronic medical records without delay and without charge. This rule does not include notes from psychotherapy sessions that are not contained within the regular medical record, but it does include any diagnoses made. If a patient believes anything in that record is wrong — such as an incorrect psychiatric diagnosis — they can request that it be changed. See the “Tools” section below for specific guidance on how to purgi falsehoods from your medical record.

Fully fixing the problem of incorrect psychiatric diagnoses, and the array of challenges that result from them, will take a major shift in mindset in the medical profession. It will require a much more nuanced understanding of the complexities of how our mental and physical states affect one another bidirectionally. It will require an acceptance that psychological treatment is an adjunct for physical treatment, rather than a way of getting rid of responsibility for a problematic patient. And it will require a transformation in our healthcare system so that doctors have the time they need to investigate complex patients.

Such changes are beyond what any individual patient can accomplish. But in the meantime, patients can at least ensure that their medical records aren’t making their quest for accurate diagnosis and effective treatment more difficult.


This story originally appeared on OpenMind, a digital magazine tackling science controversies and deceptions.

Commentary |
No way having a baby should cause a financial catastrophe


by Lindsay K. Saunders




... my first and only experience with motherhood was marred by stress and trauma.

I had a baby in 2021 and quickly learned how parenting and child care expenses add up.

My husband and I had saved up for months to afford my unpaid maternity leave — I kept working even after my water broke because we needed every penny. It was a dream come true to have a career that I was proud of and finally be welcoming a child into our lives.

But I had no idea how hard it would really be.

Bringing a bundles of joy like this cute little one into the world shouldn't be a financial burden.
Photo: Kaushal Mishra/Unsplash
While I was on unpaid maternity leave that cost us our health benefits, my husband was let go from his job. Already reliant on WIC — the federal food aid program for women, infants, and children — we were forced to go to food pantries, apply for Medicaid, and referred to a diaper bank. We were in survival mode: exhausted, stressed out, and worried.

Despite a litany of postpartum complications that continue to plague me more than two years later, I ended up only taking seven weeks of leave before I returned to work out of desperation.

I wondered: Why doesn’t the U.S. have a paid parental leave policy?

Instead, my first and only experience with motherhood was marred by stress and trauma. Again and again, I had to choose between my health and a paycheck, which can feel like a punishment. I’d proudly served my country on a one-year assignment overseas working on foreign aid, and it didn’t matter.

We found child care at a loving, quality child care center, but the tuition kept increasing. Now the monthly cost is almost twice our mortgage. In fact, child care costs exceed college tuition where we live in North Carolina, as well as in at least 27 other states. My stomach gets in a knot every six months when I know the tuition will increase again.

I wondered: Why don’t we invest more in early care and education?

Meanwhile, the crises causing outsized harm to families throughout the pandemic compounded: a diaper shortage, a formula shortage, inflation, and wages that wouldn’t keep up. So many people are struggling to get back on their feet and desperately need balance and some peace of mind. The stress took its toll, and my husband and I separated in spring 2023.

I wondered: If only we’d had more support, would we have made it?

I have an advanced degree and work as a communications director at a nonprofit while also freelancing. After paying for necessities, we have nothing left, so I get food and supplies from neighbors and friends. I work so hard as a single mom to try to achieve the dreams I have for myself and my baby boy — the dreams that all mothers have. I don’t want my child to deal with the stress and constant refrain of “we don’t have the money for that,” like I did growing up.

Families desperately need, want, and deserve better. Welcoming a child should never be the reason a family plunges into poverty, especially in one of the wealthiest countries in the world. We shouldn’t be sacrificing health, quality early learning, or stability in exchange for a roof over our heads and food. Instead, we should be building strong foundations and generational wealth for our kids.

We need federally mandated paid parental and medical leave. We need additional dedicated funding for programs like WIC that support over 6 million families.

And we need to continue expanding the Child Tax Credit. In North Carolina alone, the monthly Child Tax Credits received in 2021 helped the families of 140,000 children lift themselves out of poverty. Nationally, the credit cut child poverty by over 40 percent before Congress let the pandemic expansion expire at the end of 2021.

Congress must put our tax dollars and policies toward strong support for families. Let’s ensure no parent experiences welcoming a child a child as a financial catastrophe and make this country a place where families prosper.


About the author:
Lindsay K. Saunders is a North Carolina mother and dedicated advocate for RESULTS Educational Fund, a national anti-poverty organization. This op-ed was distributed by OtherWords.org.

Commentary |
Bridging Gaps in Healthcare: An Urgent Call for Avoiding Medication Errors and Improved Medication Reconciliation

by Angela Buxton

Why can I speak about this issue? I worked as a pharmacy technician before working as a Registered Nurse (RN) and ultimately becoming a Nurse Practitioner (NP) in 2000. I have been employed in health care for 33 years, including over 20 of those years as a NP. At present, I work in a specialized emergency service, and am attending the University of Washington for a Doctor of Nursing Practice (DNP) degree. I am writing in hopes to affect change on this ubiquitous delivery of health care problem.

Viewpoints
A personal story exemplifies this issue. My 90-year-old grandfather was discharged from an ER and resumed taking a long discontinued antihypertensive (blood pressure) medication from an old pill bottle. He took this in addition to his newly prescribed antihypertensive medication, both medications listed as active in his discharge instructions.

Fortunately, my grandfather was okay, and my mother caught this error and understandably had something to say about it. She drove back to the hospital to give them a piece of her mind, before recommending they come up with a better system. They agreed.

One recurring and nationwide theme are health care providers, and patients, becoming confused with the list of medications in their medical records in all phases of care, including at hospital admission and discharge. This medication list often includes medications that are listed as active and those they haven't taken at times since many years ago.

Sadly, this is not an exaggeration, and often leads to harmful medication errors which are a big problem during all phases of health care. Affected phases include outpatient ambulatory care clinics, during hospital admissions, during hospital stays and hospital discharge. Because of these gaps, medication errors are not surprisingly a leading cause of injury or death.

This is a serious issue that I believe can be solved with a concerted effort by an interdisciplinary team approach along with a streamlined electronic health record system. This is in addition to an emphasis on patient education throughout all stages of treatment which includes outpatient care, an urgent hospital visit or inpatient stay. Providers and ancillary services should always be involved in this process.

Better practice solutions:

1. For health care providers, at all phases of treatment, if it remains unclear if a patient is taking a medication, ask questions, and if medication reconciliation is not possible then list it as such. Increasing awareness of this problem in the advent of increasing use of Electronic Health Records (EHR) is key.

2. Incorporation of admission and discharge medication reconciliation as a continuous process by admitting and discharging RNs, the pharmacist and nurse practitioner and physicians.

As noted by J AM Med inform Association (2016) working towards a solution would include incorporating reconciliation modules that are interoperable with other Electronic Health Record components. This includes medication history, the computerized order set and discharge documentation. Some EHRs have some interoperability with external sources (hospitals, clinics, pharmacy) to import medication history and share updated medication list at discharge, although this is not fail safe and should not be relied on itself alone.

3. As health care consumers, don't be afraid to ask questions or clarification. Most health care providers want you to be involved in your own care. You reserve this right 100 percent and it is okay to ask questions and include your loved ones to advocate for you in your treatment plan.

In summary, medication confusion and errors are fear reaching. It is up to us as health care providers to be conscientious and provide essential emphasis on patient education and collaboration. Encouraging patients and their loved ones to actively participate in their care is vital. This includes asking questions and seeking clarification about medications along with interdisciplinary providers to help prevent confusion and potential medication errors. Involving patient's loved ones can contribute to healthy outcomes. Refining EHR is of the utmost importance.

I thank all health care providers for dedication to this important cause, and I wish success in your continued efforts to make a positive impact on health care practices while encouraging health consumers to be proactive in their care.


Angela Buxton, FNP-BC is a national Board-Certified (BC) Family Nurse Practitioner (FNP) since 2000 and who is originally from Massachusetts, obtaining her undergraduate and graduate degrees at UMASS, Amherst, and worked as both a Registered Nurse (RN) and FNP throughout her career. She is currently attending the University of Washington to expand her skills as a Doctor of Nursing Practice in Psychiatric Mental Health. She has now been working as a NP at Harborview Medical Center in Seattle, Washington for the last 20 years. She enjoys her role in assessing, diagnosing and developing client centered treatment plans, not limited to prescribing medications. Population includes those who are underserved and across the lifespan. She has membership in Snohomish County, WA Search and Rescue (SSAR), has participated in team endurance events with lessons learned that crossover into daily life. Other outside interests include photography, painting, skiing and hiking the Pacific Northwest.

New Medicare Advantage now tailoring to Asian Americans, Latinos, and LGBTQ+ needs

by Stephanie Stephens
Kaiser Health News

As Medicare Advantage continues to gain popularity among seniors, three Southern California companies are pioneering new types of plans that target cultural and ethnic communities with special offerings and native-language practitioners.

Clever Care Health Plan, based in Huntington Beach, and Alignment Health, based in nearby Orange, both have plans aimed at Asian Americans, with extra benefits including coverage for Eastern medicines and treatments such as cupping and tui na massage. Alignment also has an offering targeting Latinos, while Long Beach-based SCAN Health Plan has a product aimed at the LGBTQ+ community. All of them have launched since 2020.


Asian Americans may want coverage for traditional Eastern treatments, while LGBTQ+ patients might be especially concerned with HIV prevention or management

While many Medicare Advantage providers target various communities with their advertising, this trio of companies appear to be among the first in the nation to create plans with provider networks and benefits designed for specific cultural cohorts. Medicare Advantage is typically cheaper than traditional Medicare but generally requires patients to use in-network providers.

“This fits me better,” said Clever Care member Tam Pham, 78, a Vietnamese American from Westminster, California. Speaking to KFF Health News via an interpreter, she said she appreciates the dental care and herbal supplement benefits included in her plan, and especially the access to a Vietnamese-speaking doctor.

“I can always get help when I call, without an interpreter,” she said.

Proponents of these new culturally targeted plans say they can offer not only trusted providers who understand their patients’ unique context and speak their language, but also special products and services designed for their needs. Asian Americans may want coverage for traditional Eastern treatments, while LGBTQ+ patients might be especially concerned with HIV prevention or management, for example.

Health policy researchers note that Medicare Advantage tends to be lucrative for insurers but can be a mixed bag for patients, who often have a limited choice of providers — and that targeted plans would not necessarily solve that problem. Some also worry that the approach could end up being a new vector for discrimination.

“It’s strange to think about commodifying and profiting off people’s racial and ethnic identities,” said Naomi Zewde, an assistant professor at the UCLA Fielding School of Public Health. “We should do so with care and proceed carefully, so as not to be exploitive.”

Still, there’s plenty of evidence that patients can benefit from care that is targeted to their race, ethnicity, or sexual orientation.

A November 2020 study of almost 118,000 patient surveys, published in JAMA Network Open, underscored the need for a connection between physician and patient, finding that patients with the same racial or ethnic background as their physicians are more likely to rate the latter highly. A 2022 survey of 11,500 people around the world by the pharmaceutical company Sanofi showed a legacy of distrust in health care systems among marginalized groups, such as ethnic minorities, LGBTQ+ people, and people with disabilities.

Clever Care, founded by Korean American health care executive Myong Lee, aimed from the start to create Medicare Advantage plans for underserved Asian communities, said Peter Winston, the senior vice president and general manager of community and provider development at the company. “When we started enrollments, we realized there is no one ‘Asian,’ but there is Korean, Chinese, Vietnamese, Filipino, and Japanese,” Winston added.

The company has separate customer service lines by language and gives members flexibility on how and where to spend their allowances for benefits like fitness programs.

Winston said the plan began with 500 members in January 2021 and is now up to 14,000 (still very small compared with mainstream plans). Herbal supplement benefit dollars vary by plan, but more than 200 products traditionally used by Asian clients are on offer, with coverage of up to several hundred dollars per quarter.

Sachin Jain, a physician and the CEO of SCAN Group, said its LGBTQ+ plan serves 600 members.

“This is a group of people who, for much of their lives, lived in the shadows,” Jain added. “There is an opportunity for us as a company to help affirm them, to provide them with a special set of benefits that address unmet needs.”


Alignment also has an offering aimed at Latinos, dubbed el Único, in parts of Arizona, Nevada, Texas, Florida, and California.

SCAN has run into bias issues itself, with some of its employees posting hate speech and one longtime provider refusing to participate in the plan, Jain recounted.

Alignment Health offers a plan targeting Asian Americans in six California counties, with benefits such as traditional wellness services, a grocery allowance for Asian stores, nonemergency medical transportation, and even pet care in the event a member has a hospital procedure or emergency and needs to be away from home.

Alignment also has an offering aimed at Latinos, dubbed el Único, in parts of Arizona, Nevada, Texas, Florida, and California. The California product, an HMO co-branded with Rite Aid, is available in six counties, while in Florida and Nevada, it’s a so-called special needs plan for Medicare beneficiaries who also qualify for Medicaid. All offer a Spanish-speaking provider network.

Todd Macaluso, the chief growth officer for Alignment, declined to share specific numbers but said California membership in Harmony — its plan tailored to Asian Americans — and el Único together has grown 80% year over year since 2021.

Alignment’s marketing efforts, which include visiting places where prospective members may shop or socialize, are about more than just signing up customers, Macaluso said.

“Being present there means we can see what works, what’s needed, and build it out. The Medicare-eligible population in Fresno looks very different from one in Ventura.”

“Just having materials in the same language is important, as is identifying the caller and routing them properly,” Macaluso added.

Blacks, Latinos, and Asians overall are significantly more likely than white beneficiaries to choose Medicare Advantage plans, according to recent research conducted for Better Medicare Alliance, a nonprofit funded by health insurers. (Latino people can be of any race or combination of races.) But it’s not clear to what extent that will translate into the growth of targeted networks: Big insurers’ Medicare Advantage marketing efforts often target specific racial or ethnic cohorts, but the plans don’t usually include any special features for those groups.

Utibe Essien, an assistant professor of medicine at UCLA, noted the historical underserving of the Black community, and that the shortage of Black physicians could make it hard to build a targeted offering for that population. Similarly, many parts of the country don’t have a high enough concentration of specific groups to support a dedicated network.

Still, all three companies are optimistic about expansion among groups that haven’t always been treated well by the health care system. “If you treat them with respect, and bring care to them the way they expect it, they will come,” Winston said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Remote work was an underestimated benefit and blessing for family caregivers

by Joanne Kenen
Kaiser Health News

Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

For Aida Beltré, working remotely during the pandemic came as a relief.

She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.

Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

She quit. “I needed to see my dad,” she said.

Couple out for a walk

Photo: Pixabay/Mark Thomas
Work-from-home made it much easier for caregivers to take care of their loved ones and improve the quality of life those they were responsible for during the COVID-19 pandemic.

In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.

That’s a missed opportunity, caregivers and their advocates say.

Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

After her stepmother died, Beltré moved her father into her home in Fort Myers, Florida, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

She’s also not alone. About one-fifth of U.S. workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.

Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out — only to the grocery store and church, and even then she’s constantly checking on her dad.

“This is the story of my life,” she said.

Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.

President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers outlining how federal agencies can help and offering road maps for the private sector.

Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.


They cashed in his retirement fund to hire part-time caregivers.

So that leaves it up to families.

Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

But there are countless scenarios in which the option to work remotely is an enormous help.

When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.

That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.


If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.

Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”

But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.


Temote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom.

At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.”

Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only 1 in 4 private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.

And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”


KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.


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