CHARLESTON, S.C. — Melanie Gray Miller, a 30-year-old physician, wiped away tears as she described the isolation she felt after losing a beloved patient.
“It was at the end of a night shift, when it seems like bad things always happen,” said Miller, who is training to become a pediatrician.
The infant had been sick for months in the Medical University of South Carolina’s pediatric intensive care unit and the possibility that he might not improve was obvious, Miller recalled during an April meeting with physicians and hospital administrators. But the suddenness of his death still caught her off guard.
“I have family and friends that I talk to about things,” she said. “But no one truly understands.”
Doctors don’t typically take time to grieve at work. But during that recent meeting, Miller and her colleagues opened up about the insomnia, emotional exhaustion, trauma, and burnout they experienced from their time in the pediatric ICU.
“This is not a normal place,” Grant Goodrich, the hospital system’s director of ethics, said to the group, acknowledging an occupational hazard the industry often downplays. “Most people don’t see kids die.”
The recurring conversation, scheduled for early-career doctors coming off monthlong pediatric ICU rotations, is one way the hospital helps staffers cope with stress, according to Alyssa Rheingold, a licensed clinical psychologist who leads its resiliency program.
“Often the focus is to teach somebody how to do yoga and take a bath,” she said. “That’s not at all what well-being is about.”
Burnout in the health care industry is a widespread problem that long predates the covid-19 pandemic, though the chaos introduced by the coronavirus’s spread made things worse, physicians and psychologists said. Health systems across the country are trying to boost morale and keep clinicians from quitting or retiring early, but the stakes are higher than workforce shortages.
Rates of physician suicide, partly fueled by burnout, have been a concern for decades. And while burnout occurs across medical specialties, some studies have shown that primary care doctors, such as pediatricians and family physicians, may run a higher risk.
Nearly half of all Americans will have a behavioral health issue in their lifetime, from a mood disorder to a substance use problem. Behavioral health care encompasses a wide variety of interventions delivered by many different types of providers. In the U.S., nearly all these providers are in short supply.
The scarcity of behavioral health professionals is undermining people’s ability to get timely care. This is reinforced by historical underinvestment in behavioral health care by public insurance programs (like Medicaid and Medicare), private insurers, and employers — including lack of coverage and low reimbursement rates. In 2021, fewer than half of people with a mental illness were able to access timely care; those with substance use disorders were even less likely. Some groups are disproportionately impacted by workforce shortages:
- Many rural areas and economically stressed cities have few, if any, behavioral health care providers. For example, in 2018, more than half of the counties in the U.S. did not have a practicing psychiatrist. One study found that counties outside of metropolitan areas had one-third the supply of psychiatrists and half the supply of psychologists as their more urban counterparts. As of March 2023, 160 million Americans live in areas with mental health professional shortages, with over 8,000 more professionals needed to ensure an adequate supply.
- People covered by Medicaid and, to a lesser extent, Medicare struggle to find providers that accept their insurance, in large part because of low reimbursement rates, particularly in Medicaid. One study found that in Oregon, more than half of the mental health providers listed in network directories of Medicaid managed care plans did not actually see Medicaid enrollees. This has profound implications for equitable access, as Medicaid is the nation’s largest payer of behavioral health services.
- Underserved groups like people of color, non-English speakers, and LGBTQ communities often struggle to find appropriate services. As is the case with many other health care specialties, the demographics of the behavioral health workforce often do not reflect those of the people they serve. For example, while nearly one-third of the U.S. population is Black or Hispanic, only about a tenth of practicing psychiatrists come from these communities. This mismatch limits the ability of people to get culturally and linguistically appropriate care.
To better understand these shortages, we need to know who makes up the behavioral health workforce and the challenges they face in providing care to underserved communities.
Brenda Powell had suffered a stroke and was in debilitating pain when she called the Social Security Administration last year to seek disability benefits.
The former Louisiana state office worker struggled at times to write her name or carry a glass of water. Powell, then 62, believed she could no longer work, and she was worried about how to pay for medical care with only a $433 monthly pension.
Although the Social Security Administration agreed that Powell’s condition limited the work she could do, the agency rejected her initial application for Supplemental Security Income. She had the choice to appeal that decision, which could take months or years to resolve, or take early retirement. The latter option would give her $302 a month now but might permanently reduce the full Social Security retirement payment she would be eligible for at age 66 and 10 months.
“I didn’t know what to do. These decisions are not easy,” said Powell, who lives in Alexandria, Louisiana, about 200 miles northwest of New Orleans. She decided to appeal the decision but take early retirement in the meantime.
“I had to have more money to pay my bills,” she said. “I had nothing left over for gas.”
Every year, tens of thousands of people who are disabled and unable to work consider taking early retirement benefits from Social Security. The underfunded federal disability system acknowledges that it is stymied by delays and dysfunction, even as over 1 million people await a decision on their benefits application.
The United States, which has one of the least generous disability programs among developed Western nations, denies most initial claims, leaving applicants to endure a lengthy appeals process.
At the same time, Social Security agents may neglect to explain the financial downside of taking retirement benefits too early, said attorneys who help patients file disability claims. The result is a growing population of vulnerable people who feel stuck between a proverbial rock and a hard place — to live with little money while they wait it out or agree to a significantly lower payment for the rest of their lives.
“They don’t have the luxury of waiting,” said Charles T. Hall, a disability attorney based in Raleigh, North Carolina. “The vast majority of people need the money now, and you can get early retirement benefits in two months or less.”
In a nation where more than a quarter of residents have a disability, Social Security Disability Insurance and Supplemental Security Income programs are intended to provide financial help to people who cannot work.
Medicare Advantage Special Needs Plans are available to clients who are eligible for Medicare and Medicaid (dual eligible). Special Needs Plans provide additional benefits to clients beyond what traditional Medicare and Medicaid provide including, but not limited to, care coordination, gym memberships, transportation to medical appointments and meal delivery.
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Waiting for their turn in the emergency room, dazed-looking parents in winter coats bounced crying children in their arms, trying to catch the eye of Dr. Erica Michiels. Us! Pick us next! they seemed to plead with tired eyes.
Michiels directs pediatric emergency medicine at Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. Lips pressed together in a thin line, she surveyed what she calls the “disaster” area.
“People have been out here waiting for a couple hours, which is heartbreaking,” she said.
Typically, the ER at DeVos Children’s sees about 140 kids each day, according to Michiels, but on a recent Tuesday in early December, they saw 253.
“I hate when we have a wait,” sighed Michiels. “But for right now, we can’t do it any other way.”
Like many other children’s hospitals across the nation, the capacity of the staff at DeVos Children’s has been stretched by waves of patients with RSV and, increasingly, the flu.
This surge of sick kids is coming after years of some U.S. hospitals cutting back on pediatric beds — in part because it is typically more profitable to treat adult patients. The remaining pediatric beds are increasingly concentrated in urban areas, leaving families in rural areas to travel longer distances to get care for their children.
When Staci Rodriguez brought her 9-month-old son into the ER in their hometown of Shelby Township, Michigan, she was desperate. Santiago Botello Rodriguez, who has big brown eyes and long eyelashes that everybody gushes over, had been sick for days. First Santi stopped eating, so she took him to urgent care, she said. Then he started sleeping 20 hours a day, so Rodriguez went to the pediatrician. She said she was sent home, after being told Santi was just fighting a virus.
Other Findings From Our 50-State Survey of Medicaid HCBS Programs Focus on How States Are Responding to Chronic Workforce Shortages That Were Exacerbated by the Pandemic
About 656,000 people across the country were on state waiting lists for home and community-based services financed through Medicaid waivers in 2021, finds a new KFF analysis. But such waiting lists are an incomplete and often inaccurate measure that can both overstate and understate unmet need.
The data about waiting lists are among the latest findings from the 20th KFF survey of state officials administering Medicaid HCBS programs in all 50 states and Washington DC.
Waiting lists can sometimes overstate the need for services because not all states screen for Medicaid eligibility before adding people to their lists, which inflates the numbers with people who may never be eligible for services. In all years since 2016, over half of people on HCBS waiting lists lived in states that did not screen people on waiting lists for eligibility, the new analysis found. This also is a key reason that waiting lists are not comparable across states.
Waiting lists can also understate need. They reflect the populations a state chooses to serve, as well as the resources it commits. In many cases, people may need additional services, but because the state doesn’t offer them—or doesn’t offer them to specific populations, such as people ages 65 and older—they would not appear on a waiting list.
HCBS waiting lists remain a source of concern to policymakers and proposals to eliminate them have been put forth by both Republicans and Democrats.
Many of the other findings from the 50-state survey focus on chronic workforce shortages that were exacerbated by the COVID-19 pandemic and are the biggest challenges facing state Medicaid HCBS programs. Key takeaways from that analysis include:
- Amid the pandemic, HCBS workforce shortages have contributed to provider closures. Most states (44) reported a permanent closure of at least one Medicaid HCBS provider during the pandemic, up from 30 states in 2021.
- Almost all states (48) responded to the workforce crisis by increasing HCBS provider payment rates. States also increased self-directed and family caregiving opportunities for HCBS beneficiaries. All states offer at least one HCBS program with the option for enrollees to self-direct their services. Forty-eight states allow legally responsible relatives to be paid caregivers, up from 36 states in 2020.
- When asked how they used temporary funding from the American Rescue Plan Act of 2021, over two-thirds of states (35) reported initiatives with high start-up costs that were generally time-limited to avoid higher ongoing costs after the enhanced federal funding ended. Some of the most common initiatives included offering providers bonuses or incentive payments to stay on, developing or expanding worker training or certification programs, and upgrading IT systems.
The full analyses of the survey findings are available here:
- A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021
- Ongoing Impacts of the Pandemic on Medicaid Home & Community-Based Services (HCBS) Programs: Findings from a 50-State Survey
For more data and analyses about Medicaid HCBS, visit kff.org.
The Washington State Department of Health (DOH) wants the public to know flu cases are rising quickly in Washington state and nationwide. Flu hospitalizations are at the highest rates seen in 10 years for this point in the year. In the last two weeks, DOH is reporting high cases of flu-like illnesses in Washington.
Flu illness can have serious health consequences, especially for people who are under five years old, age 65 or older, pregnant, immunocompromised, or have chronic health conditions.
In addition to the flu, other respiratory illnesses, such as COVID-19 and RSV, are combining to push our hospitals to emergency capacity. Help keep yourself and your community healthy by getting a flu vaccine and taking other measures to prevent illness.
“Our state’s pediatric healthcare system is overloaded with extremely high numbers of children with respiratory infections,” said Tao Sheng Kwan-Gett, MD, MPH, chief science officer for DOH. “Families urgently need to do everything they can to keep everyone healthy and avoid the need for healthcare, and flu vaccination is one of the most important prevention tools.”
Following the proper prevention and hygiene practices can halt the spread of respiratory illnesses. Washington State Department of Health recommends:
- Get vaccinated. Vaccination is your best defense against flu and COVID-19.
- Wash your hands frequently with soap and water. Use hand sanitizer when soap is not available, and hands are not visibly soiled.
- Consider wearing a mask in crowded settings.
- If you are sneezing or coughing, wear a mask or use the crook of your arm or a tissue to avoid getting germs onto your hands or spreading virus in the air.
- Avoid close contact with sick individuals.
- If you feel sick, stay home.
The most common strain so far is influenza A (H3N2). This strain typically causes more severe disease. All available flu vaccines provide protection against H3N2.
DOH strongly recommends everyone aged 6 months and older get the flu vaccine as soon as possible. It takes two weeks for the flu vaccine to be effective making it a key time to get vaccinated before people get together for the December holidays. If you get the flu when you are vaccinated, it’s typically milder and the vaccine can prevent serious complications including hospital care.
The flu vaccine is available at most pharmacies, health care providers’ offices, and clinics. State employees are eligible to receive SmartHealth points for receiving a flu vaccine. The flu vaccine can be received on the same day as the updated COVID-19 updated booster and other vaccines.
Find out more at KnockOutFlu.org.
Thinking about the future makes Courtney Johnson nervous.
The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.
“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.
Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.
“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.
Johnson’s situation isn’t unique.
Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.
When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.
Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.
“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.
Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.
The Centers for Disease Control and Prevention defines long covid broadly, as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.