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People with Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids

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by Tony Leys
Mon, 17 Apr 2023 09:00:00 +0000

MONTROSE, Mo. — It took Samantha Lesmeister’s family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didn’t buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the family’s cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The program’s leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

“She reassured me that, ‘Mom, you’re right. Something’s wrong with your daughter,’” Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including “hi,” “bye,” and “love you.” She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Peterson’s insight and encouragement, the family likely would have given up on Sammee’s recovery. “She probably would have continued to wither within herself,” her mother said. “I think she would have been a stay-at-home person and a recluse.”

‘A Whole Different Ballgame’

The Lesmeisters wish Peterson’s program wasn’t such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of children’s hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. That’s mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimer’s disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

“Taking care of kids is a whole different ballgame from taking care of adults,” said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If she’d been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didn’t qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. “Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve,” said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospital’s Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning they’re carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotko’s program in Boston. To help those who can’t, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments.

‘If They Say It Hurts, I Listen’

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. “That’s something that should change,” she said. “It shouldn’t just be pediatricians that are aware of these things.”

Woodward said adults with the condition should not be expected to seek care at programs housed in children’s hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. “This is really an issue of civil rights,” she said.

Advocates and clinicians say it’s crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

“It’s very important to us that we include the individuals with Down syndrome in their care,” he said. “If you’re doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes more time.”

Time costs money, which Peterson believes is why many hospital systems don’t set up specialized clinics like the ones she and Chicoine run.

Peterson’s methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and he’d lost 45 pounds over about 1½ years. He complained to his mother, Mandi Nance, that something “tickled” in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where he’d had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word “gas.”

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort.

The nurse practitioner takes seriously any such complaints from her patients. “If they say it hurts, I listen,” she said. “They’re not going to tell you about it until it hurts bad.”

Yeo’s mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeo’s discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. “I feel like it’s a godsend. I do,” she said. “I feel like it’s an answered prayer.”

‘Like a Person, and Not a Condition’

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. That’s how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. “Some people have said I need to put her in a home. And I’m like, ‘What do you mean?’ And they say, ‘You know ― a home,’” she said. “I’m like, ‘She’s in a home. Our home.’”

Sammee’s sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyn’s voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammee’s future.

“I just want her to be taken care of and loved like I love her,” she said. “I want her to be taken care of like a person, and not a condition.”

By: Tony Leys
Title: People with Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids
Sourced From: kffhealthnews.org/news/article/adults-with-down-syndrome-health-system-unprepared/
Published Date: Mon, 17 Apr 2023 09:00:00 +0000

Kaiser Health News

How To Find the Right Medical Rehab Services

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kffhealthnews.org – Jordan Rau, KFF Health News – 2025-07-15 04:45:00


Rehabilitation therapy is essential after events like strokes, accidents, or surgeries, offering physical, occupational, speech, and sometimes respiratory therapy in hospitals, nursing homes, clinics, or at home. Physical therapy improves strength and movement; occupational therapy aids daily activities; speech therapy addresses communication. Insurance coverage varies, with limits often imposed by private insurers. Inpatient rehab hospitals require patients to handle intensive therapy, with stays averaging 12 days. Choosing a facility involves checking specialties, safety records, patient outcomes, and proximity to family for support. Alternatives include nursing homes for less intensive care or long-term care hospitals for severe cases. Outpatient and home therapies are options for those able to return home. Reducing care transitions is advised for safety.


Rehabilitation therapy can be a godsend after hospitalization for a stroke, a fall, an accident, a joint replacement, a severe burn, or a spinal cord injury, among other conditions. Physical, occupational, and speech therapy are offered in a variety of settings, including at hospitals, nursing homes, clinics, and at home. It’s crucial to identify a high-quality, safe option with professionals experienced in treating your condition.

What kinds of rehab therapy might I need?

Physical therapy helps patients improve their strength, stability, and movement and reduce pain, usually through targeted exercises. Some physical therapists specialize in neurological, cardiovascular, or orthopedic issues. There are also geriatric and pediatric specialists. Occupational therapy focuses on specific activities (referred to as “occupations”), often ones that require fine motor skills, like brushing teeth, cutting food with a knife, and getting dressed. Speech and language therapy help people communicate. Some patients may need respiratory therapy if they have trouble breathing or need to be weaned from a ventilator.

Will insurance cover rehab?

Medicare, health insurers, workers’ compensation, and Medicaid plans in some states cover rehab therapy, but plans may refuse to pay for certain settings and may limit the amount of therapy you receive. Some insurers may require preauthorization, and some may terminate coverage if you’re not improving. Private insurers often place annual limits on outpatient therapy. Traditional Medicare is generally the least restrictive, while private Medicare Advantage plans may monitor progress closely and limit where patients can obtain therapy.

Should I seek inpatient rehabilitation?

Patients who still need nursing or a doctor’s care but can tolerate three hours of therapy five days a week may qualify for admission to a specialized rehab hospital or to a unit within a general hospital. Patients usually need at least two of the main types of rehab therapy: physical, occupational, or speech. Stays average around 12 days.

How do I choose?

Look for a place that is skilled in treating people with your diagnosis; many inpatient hospitals list specialties on their websites. People with complex or severe medical conditions may want a rehab hospital connected to an academic medical center at the vanguard of new treatments, even if it’s a plane ride away.

“You’ll see youngish patients with these life-changing, fairly catastrophic injuries,” like spinal cord damage, travel to another state for treatment, said Cheri Blauwet, chief medical officer of Spaulding Rehabilitation in Boston, one of 15 hospitals the federal government has praised for cutting-edge work.

But there are advantages in selecting a hospital close to family and friends who can help after you are discharged. Therapists can help train at-home caregivers.

How do I find rehab hospitals?

The discharge planner or caseworker at the acute care hospital should provide options. You can search for inpatient rehabilitation facilities by location or name through Medicare’s Care Compare website. There you can see how many patients the rehab hospital has treated with your condition — the more the better. You can search by specialty through the American Medical Rehabilitation Providers Association, a trade group that lists its members.

Find out what specialized technologies a hospital has, like driving simulators — a car or truck that enable a patient to practice getting in and out of a vehicle — or a kitchen table with utensils to practice making a meal.

How can I be confident a rehab hospital is reliable?

It’s not easy: Medicare doesn’t analyze staffing levels or post on its website results of safety inspections as it does for nursing homes. You can ask your state public health agency or the hospital to provide inspection reports for the last three years. Such reports can be technical, but you should get the gist. If the report says an “immediate jeopardy” was called, that means inspectors identified safety problems that put patients in danger.

The rate of patients readmitted to a general hospital for a potentially preventable reason is a key safety measure. Overall, for-profit rehabs have higher readmission rates than nonprofits do, but there are some with lower readmission rates and some with higher ones. You may not have a nearby choice: There are fewer than 400 rehab hospitals, and most general hospitals don’t have a rehab unit.

You can find a hospital’s readmission rates under Care Compare’s quality section. Rates lower than the national average are better.

Another measure of quality is how often patients are functional enough to go home after finishing rehab rather than to a nursing home, hospital, or health care institution. That measure is called “discharge to community” and is listed under Care Compare’s quality section. Rates higher than the national average are better.

Look for reviews of the hospital on Yelp and other sites. Ask if the patient will see the same therapist most days or a rotating cast of characters. Ask if the therapists have board certifications earned after intensive training to treat a patient’s particular condition.

Visit if possible, and don’t look only at the rooms in the hospital where therapy exercises take place. Injuries often occur in the 21 hours when a patient is not in therapy, but in his or her room or another part of the building. Infections, falls, bedsores, and medication errors are risks. If possible, observe whether nurses promptly respond to call lights, seem overloaded with too many patients, or are apathetically playing on their phones. Ask current patients and their family members if they are satisfied with the care.

What if I can’t handle three hours of therapy a day?

A nursing home that provides rehab might be appropriate for patients who don’t need the supervision of a doctor but aren’t ready to go home. The facilities generally provide round-the-clock nursing care. The amount of rehab varies based on the patient. There are more than 14,500 skilled nursing facilities in the United States, 12 times as many as hospitals offering rehab, so a nursing home may be the only option near you.

You can look for them through Medicare’s Care Compare website. (Read our previous guide to finding a good, well-staffed home to know how to assess the overall staffing.)

What if patients are too frail even for a nursing home?

They might need a long-term care hospital. Those specialize in patients who are in comas, on ventilators, and have acute medical conditions that require the presence of a physician. Patients stay at least four weeks, and some are there for months. Care Compare helps you search. There are fewer than 350 such hospitals.

I’m strong enough to go home. How do I receive therapy?

Many rehab hospitals offer outpatient therapy. You also can go to a clinic, or a therapist can come to you. You can hire a home health agency or find a therapist who takes your insurance and makes house calls. Your doctor or hospital may give you referrals. On Care Compare, home health agencies list whether they offer physical, occupational, or speech therapy. You can search for board-certified therapists on the American Physical Therapy Association’s website.

While undergoing rehab, patients sometimes move from hospital to nursing facility to home, often at the insistence of their insurers. Alice Bell, a senior specialist at the APTA, said patients should try to limit the number of transitions, for their own safety.

“Every time a patient moves from one setting to another,” she said, “they’re in a higher risk zone.”

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 story can be republished for free (details).

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.

Subscribe to KFF Health News’ free Morning Briefing.

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

The post How To Find the Right Medical Rehab Services appeared first on kffhealthnews.org



Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Centrist

This article from KFF Health News provides a comprehensive, fact-based guide to rehabilitation therapy options and how to navigate insurance, care settings, and provider quality. It avoids ideological framing and presents information in a neutral, practical tone aimed at helping consumers make informed medical decisions. While it touches on Medicare and private insurance policies, it does so without political commentary or value judgments, and no partisan viewpoints or advocacy positions are evident. The focus remains on patient care, safety, and informed choice, supporting a nonpartisan, service-oriented approach to health reporting.

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Kaiser Health News

States Brace for Reversal of Obamacare Coverage Gains Under Trump’s Budget Bill

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kffhealthnews.org – Julie Appleby, KFF Health News – 2025-07-03 14:43:00


The tax and spending bill pushed by President Trump includes provisions that shorten ACA enrollment periods, increase paperwork, and raise premiums, threatening coverage gains from the Affordable Care Act. Particularly impacted are the 19 states running their own ACA exchanges, where automatic reenrollment would end, potentially causing 30-50% enrollment losses. Combined with the likely expiration of enhanced pandemic premium subsidies, premiums could rise 75% on average next year. Supporters cite fraud reduction, but many analysts warn these changes could push 4-6 million people out of Marketplace plans, increase the uninsured rate, and leave insurers with smaller, sicker pools and higher prices.


Shorter enrollment periods. More paperwork. Higher premiums. The sweeping tax and spending bill pushed by President Donald Trump includes provisions that would not only reshape people’s experience with the Affordable Care Act but, according to some policy analysts, also sharply undermine the gains in health insurance coverage associated with it.

The moves affect consumers and have particular resonance for the 19 states (plus Washington, D.C.) that run their own ACA exchanges.

Many of those states fear that the additional red tape — especially requirements that would end automatic reenrollment — would have an outsize impact on their policyholders. That’s because a greater percentage of people in those states use those rollovers versus shopping around each year, which is more commonly done by people in states that use the federal healthcare.gov marketplace.

“The federal marketplace always had a message of, ‘Come back in and shop,’ while the state-based markets, on average, have a message of, ‘Hey, here’s what you’re going to have next year, here’s what it will cost; if you like it, you don’t have to do anything,’” said Ellen Montz, who oversaw the federal ACA marketplace under the Biden administration as deputy administrator and director at the Center for Consumer Information and Insurance Oversight. She is now a managing director with the Manatt Health consulting group.

Millions — perhaps up to half of enrollees in some states — may lose or drop coverage as a result of that and other changes in the legislation combined with a new rule from the Trump administration and the likely expiration at year’s end of enhanced premium subsidies put in place during the covid-19 pandemic. Without an extension of those subsidies, which have been an important driver of Obamacare enrollment in recent years, premiums are expected to rise 75% on average next year. That’s starting to happen already, based on some early state rate requests for next year, which are hitting double digits.

“We estimate a minimum 30% enrollment loss, and, in the worst-case scenario, a 50% loss,” said Devon Trolley, executive director of Pennie, the ACA marketplace in Pennsylvania, which had 496,661 enrollees this year, a record.

Drops of that magnitude nationally, coupled with the expected loss of Medicaid coverage for millions more people under the legislation Trump calls the “One Big Beautiful Bill,” could undo inroads made in the nation’s uninsured rate, which dropped by about half from the time most of the ACA’s provisions went into effect in 2014, when it hovered around 14% to 15% of the population, to just over 8%, according to the most recent data.

Premiums would rise along with the uninsured rate, because older or sicker policyholders are more likely to try to jump enrollment hurdles, while those who rarely use coverage — and are thus less expensive — would not.

After a dramatic all-night session, House Republicans passed the bill, meeting the president’s July 4 deadline. Trump is expected to sign the measure on Independence Day. It would increase the federal deficit by trillions of dollars and cut spending on a variety of programs, including Medicaid and nutrition assistance, to partly offset the cost of extending tax cuts put in place during the first Trump administration.

The administration and its supporters say the GOP-backed changes to the ACA are needed to combat fraud. Democrats and ACA supporters see this effort as the latest in a long history of Republican efforts to weaken or repeal Obamacare. Among other things, the legislation would end several changes put in place by the Biden administration that were credited with making it easier to sign up, such as lengthening the annual open enrollment period and launching a special program for very low-income people that essentially allows them to sign up year-round.

In addition, automatic reenrollment, used by more than 10 million people for 2025 ACA coverage, would end in the 2028 sign-up season. Instead, consumers would have to update their information, starting in August each year, before the close of open enrollment, which would end Dec. 15, a month earlier than currently.

That’s a key change to combat rising enrollment fraud, said Brian Blase, president of the conservative Paragon Health Institute, because it gets at what he calls the Biden era’s “lax verification requirements.”

He blames automatic reenrollment, coupled with the availability of zero-premium plans for people with lower incomes that qualify them for large subsidies, for a sharp uptick in complaints from insurers, consumers, and brokers about fraudulent enrollments in 2023 and 2024. Those complaints centered on consumers’ being enrolled in an ACA plan, or switched from one to another, without authorization, often by commission-seeking brokers.

In testimony to Congress on June 25, Blase wrote that “this simple step will close a massive loophole and significantly reduce improper enrollment and spending.”

States that run their own marketplaces, however, saw few, if any, such problems, which were confined mainly to the 31 states using the federal healthcare.gov.

The state-run marketplaces credit their additional security measures and tighter control over broker access than healthcare.gov for the relative lack of problems.

“If you look at California and the other states that have expanded their Medicaid programs, you don’t see that kind of fraud problem,” said Jessica Altman, executive director of Covered California, the state’s Obamacare marketplace. “I don’t have a single case of a consumer calling Covered California saying, ‘I was enrolled without consent.’”

Such rollovers are common with other forms of health insurance, such as job-based coverage.

“By requiring everyone to come back in and provide additional information, and the fact that they can’t get a tax credit until they take this step, it is essentially making marketplace coverage the most difficult coverage to enroll in,” said Trolley at Pennie, 65% of whose policyholders were automatically reenrolled this year, according to KFF data. KFF is a health information nonprofit that includes KFF Health News.

Federal data shows about 22% of federal sign-ups in 2024 were automatic-reenrollments, versus 58% in state-based plans. Besides Pennsylvania, the states that saw such sign-ups for more than 60% of enrollees include California, New York, Georgia, New Jersey, and Virginia, according to KFF.

States do check income and other eligibility information for all enrollees — including those being automatically renewed, those signing up for the first time, and those enrolling outside the normal open enrollment period because they’ve experienced a loss of coverage or other life event or meet the rules for the low-income enrollment period.

“We have access to many data sources on the back end that we ping, to make sure nothing has changed. Most people sail through and are able to stay covered without taking any proactive step,” Altman said.

If flagged for mismatched data, applicants are asked for additional information. Under current law, “we have 90 days for them to have a tax credit while they submit paperwork,” Altman said.

That would change under the tax and spending plan before Congress, ending presumptive eligibility while a person submits the information.

A white paper written for Capital Policy Analytics, a Washington-based consultancy that specializes in economic analysis, concluded there appears to be little upside to the changes.

While “tighter verification can curb improper enrollments,” the additional paperwork, along with the expiration of higher premiums from the enhanced tax subsidies, “would push four to six million eligible people out of Marketplace plans, trading limited fraud savings for a surge in uninsurance,” wrote free market economists Ike Brannon and Anthony LoSasso.

“Insurers would be left with a smaller, sicker risk pool and heightened pricing uncertainty, making further premium increases and selective market exits [by insurers] likely,” they wrote.

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.

USE OUR CONTENT

This story can be republished for free (details).

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.

Subscribe to KFF Health News’ free Morning Briefing.

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

The post States Brace for Reversal of Obamacare Coverage Gains Under Trump’s Budget Bill appeared first on kffhealthnews.org



Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

This content presents a critique of Republican-led changes to the Affordable Care Act, emphasizing potential negative impacts such as increased premiums, reduced enrollment, and the erosion of coverage gains made under the ACA. It highlights the perspective of policy analysts and state officials who express concern over these measures, while also presenting conservative viewpoints, particularly those focusing on fraud reduction. Overall, the tone and framing lean toward protecting the ACA and its expansions, which traditionally aligns with Center-Left media analysis.

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Kaiser Health News

Dual Threats From Trump and GOP Imperil Nursing Homes and Their Foreign-Born Workers

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kffhealthnews.org – Jordan Rau, KFF Health News – 2025-06-26 04:00:00


In Alexandria, Virginia, Rev. Donald Goodness, 92, is cared for by many foreign-born nurses like Jackline Conteh from Sierra Leone, who vigilantly manages his celiac disease needs. The long-term care industry relies heavily on immigrants, with 28% of direct care workers being foreign-born. However, President Trump’s 2024 immigration crackdown, including rescinded protections and revoked work permits for refugees, threatens staffing levels. Coupled with proposed Medicaid spending cuts, nursing homes face worsening shortages and quality challenges. Many immigrant caregivers fear deportation, risking a crisis in elder care as demand rises with America’s aging population.


In a top-rated nursing home in Alexandria, Virginia, the Rev. Donald Goodness is cared for by nurses and aides from various parts of Africa. One of them, Jackline Conteh, a naturalized citizen and nurse assistant from Sierra Leone, bathes and helps dress him most days and vigilantly intercepts any meal headed his way that contains gluten, as Goodness has celiac disease.

“We are full of people who come from other countries,” Goodness, 92, said about Goodwin House Alexandria’s staff. Without them, the retired Episcopal priest said, “I would be, and my building would be, desolate.”

The long-term health care industry is facing a double whammy from President Donald Trump’s crackdown on immigrants and the GOP’s proposals to reduce Medicaid spending. The industry is highly dependent on foreign workers: More than 800,000 immigrants and naturalized citizens comprise 28% of direct care employees at home care agencies, nursing homes, assisted living facilities, and other long-term care companies.

But in January, the Trump administration rescinded former President Joe Biden’s 2021 policy that protected health care facilities from Immigration and Customs Enforcement raids. The administration’s broad immigration crackdown threatens to drastically reduce the number of current and future workers for the industry. “People may be here on a green card, and they are afraid ICE is going to show up,” said Katie Smith Sloan, president of LeadingAge, an association of nonprofits that care for older adults.

Existing staffing shortages and quality-of-care problems would be compounded by other policies pushed by Trump and the Republican-led Congress, according to nursing home officials, resident advocates, and academic experts. Federal spending cuts under negotiation may strip nursing homes of some of their largest revenue sources by limiting ways states leverage Medicaid money and making it harder for new nursing home residents to retroactively qualify for Medicaid. Care for 6 in 10 residents is paid for by Medicaid, the state-federal health program for poor or disabled Americans.

“We are facing the collision of two policies here that could further erode staffing in nursing homes and present health outcome challenges,” said Eric Roberts, an associate professor of internal medicine at the University of Pennsylvania.

The industry hasn’t recovered from covid-19, which killed more than 200,000 long-term care facility residents and workers and led to massive staff attrition and turnover. Nursing homes have struggled to replace licensed nurses, who can find better-paying jobs at hospitals and doctors’ offices, as well as nursing assistants, who can earn more working at big-box stores or fast-food joints. Quality issues that preceded the pandemic have expanded: The percentage of nursing homes that federal health inspectors cited for putting residents in jeopardy of immediate harm or death has risen alarmingly from 17% in 2015 to 28% in 2024.

In addition to seeking to reduce Medicaid spending, congressional Republicans have proposed shelving the biggest nursing home reform in decades: a Biden-era rule mandating minimum staffing levels that would require most of the nation’s nearly 15,000 nursing homes to hire more workers.

The long-term care industry expects demand for direct care workers to burgeon with an influx of aging baby boomers needing professional care. The Census Bureau has projected the number of people 65 and older would grow from 63 million this year to 82 million in 2050.

In an email, Vianca Rodriguez Feliciano, a spokesperson for the Department of Health and Human Services, said the agency “is committed to supporting a strong, stable long-term care workforce” and “continues to work with states and providers to ensure quality care for older adults and individuals with disabilities.” In a separate email, Tricia McLaughlin, a Department of Homeland Security spokesperson, said foreigners wanting to work as caregivers “need to do that by coming here the legal way” but did not address the effect on the long-term care workforce of deportations of classes of authorized immigrants.

Goodwin Living, a faith-based nonprofit, runs three retirement communities in northern Virginia for people who live independently, need a little assistance each day, have memory issues, or require the availability of around-the-clock nurses. It also operates a retirement community in Washington, D.C. Medicare rates Goodwin House Alexandria as one of the best-staffed nursing homes in the country. Forty percent of the organization’s 1,450 employees are foreign-born and are either seeking citizenship or are already naturalized, according to Lindsay Hutter, a Goodwin spokesperson.

“As an employer, we see they stay on with us, they have longer tenure, they are more committed to the organization,” said Rob Liebreich, Goodwin’s president and CEO.

Jackline Conteh spent much of her youth shuttling between Sierra Leone, Liberia, and Ghana to avoid wars and tribal conflicts. Her mother was killed by a stray bullet in her home country of Liberia, Conteh said. “She was sitting outside,” Conteh, 56, recalled in an interview.

Conteh was working as a nurse in a hospital in Sierra Leone in 2009 when she learned of a lottery for visas to come to the United States. She won, though she couldn’t afford to bring her husband and two children along at the time. After she got a nursing assistant certification, Goodwin hired her in 2012.

Conteh said taking care of elders is embedded in the culture of African families. When she was 9, she helped feed and dress her grandmother, a job that rotated among her and her sisters. She washed her father when he was dying of prostate cancer. Her husband joined her in the United States in 2017; she cares for him because he has heart failure.

“Nearly every one of us from Africa, we know how to care for older adults,” she said.

Her daughter is now in the United States, while her son is still in Africa. Conteh said she sends money to him, her mother-in-law, and one of her sisters.

In the nursing home where Goodness and 89 other residents live, Conteh helps with daily tasks like dressing and eating, checks residents’ skin for signs of swelling or sores, and tries to help them avoid falling or getting disoriented. Of 102 employees in the building, broken up into eight residential wings called “small houses” and a wing for memory care, at least 72 were born abroad, Hutter said.

Donald Goodness grew up in Rochester, New York, and spent 25 years as rector of The Church of the Ascension in New York City, retiring in 1997. He and his late wife moved to Alexandria to be closer to their daughter, and in 2011 they moved into independent living at the Goodwin House. In 2023 he moved into one of the skilled nursing small houses, where Conteh started caring for him.

“I have a bad leg and I can’t stand on it very much, or I’d fall over,” he said. “She’s in there at 7:30 in the morning, and she helps me bathe.” Goodness said Conteh is exacting about cleanliness and will tell the housekeepers if his room is not kept properly.

Conteh said Goodness was withdrawn when he first arrived. “He don’t want to come out, he want to eat in his room,” she said. “He don’t want to be with the other people in the dining room, so I start making friends with him.”

She showed him a photo of Sierra Leone on her phone and told him of the weather there. He told her about his work at the church and how his wife did laundry for the choir. The breakthrough, she said, came one day when he agreed to lunch with her in the dining room. Long out of his shell, Goodness now sits on the community’s resident council and enjoys distributing the mail to other residents on his floor.

“The people that work in my building become so important to us,” Goodness said.

While Trump’s 2024 election campaign focused on foreigners here without authorization, his administration has broadened to target those legally here, including refugees who fled countries beset by wars or natural disasters. This month, the Department of Homeland Security revoked the work permits for migrants and refugees from Cuba, Haiti, Nicaragua, and Venezuela who arrived under a Biden-era program.

“I’ve just spent my morning firing good, honest people because the federal government told us that we had to,” Rachel Blumberg, president of the Toby & Leon Cooperman Sinai Residences of Boca Raton, a Florida retirement community, said in a video posted on LinkedIn. “I am so sick of people saying that we are deporting people because they are criminals. Let me tell you, they are not all criminals.”

At Goodwin House, Conteh is fearful for her fellow immigrants. Foreign workers at Goodwin rarely talk about their backgrounds. “They’re scared,” she said. “Nobody trusts anybody.” Her neighbors in her apartment complex fled the U.S. in December and returned to Sierra Leone after Trump won the election, leaving their children with relatives.

“If all these people leave the United States, they go back to Africa or to their various countries, what will become of our residents?” Conteh asked. “What will become of our old people that we’re taking care of?”

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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Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

This content primarily highlights concerns about the impact of restrictive immigration policies and Medicaid spending cuts proposed by the Trump administration and Republican lawmakers on the long-term care industry. It emphasizes the importance of immigrant workers in healthcare, the challenges that staffing shortages pose to patient care, and the potential negative effects of GOP policy proposals. The tone is critical of these policies while sympathetic toward immigrant workers and advocates for maintaining or increasing government support for healthcare funding. The framing aligns with a center-left perspective, focusing on social welfare, immigrant rights, and concern about the consequences of conservative economic and immigration policies without descending into partisan rhetoric.

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