If the feared reductions come to fruition, states would likely respond by either lowering their payment rates or restricting whom they cover and for how long.

This article first appeared September 28, 2017 on Kaiser Health News.

By Jordan Rau

Nursing homes that rely the most on Medicaid tend to provide the worst care for their residents — not just the people covered by the program but also those who pay privately or have Medicare coverage.

Despite the collapse of the latest Senate effort to repeal the Affordable Care Act, congressional Republicans are still keen on shrinking the amount of Medicaid money Washington sends states.

Down the line, this would create problems for the nation’s 1.4 million nursing home residents, two-thirds of whom are covered by the state-federal health care program for low-income and disabled people.

Medicaid already pays less than other forms of insurance. As a result, nursing homes make more than 10 percent on Medicare residents, but lose about 2 percent on the rest of their residents because so many have care paid for by Medicaid.

If the feared reductions come to fruition, states would likely respond by either lowering their payment rates or restricting whom they cover and for how long. And the quality of care, experts say, would deteriorate further.

These four charts, based on a Kaiser Health News analysis of ratings from the federal government’s Nursing Home Compare website, show how care suffers in nursing homes where Medicaid is the dominant payer for residents.

The government rates nursing homes on a scale from one to five stars, based on overall quality. Factors weighed: how well each facility performs on government inspections, how many nurses and aides it employs, and how healthy its residents are as judged by such measures as how often they fall, get infections or are admitted to the hospital.

The chart below shows the big picture: Nursing homes with higher percentages of residents covered by Medicaid earn fewer stars on the federal government’s overall quality rating system. One-star homes (lowest quality) average 69 percent of residents on Medicaid; Five-star (highest quality) average 49 percent of residents on Medicaid.

A prime reason for the disparity, researchers have found, is that nursing homes with the most Medicaid residents can’t afford as many nurses and aides. Medicare assigns a second type of star rating representing staffing levels and based on the ratio of nurses to residents. As the chart below shows, the staffing differences are huge: The average five-star home has enough nurses and aides to provide 5.4 hours of care a day for each resident while the average one-star home provides 3.0 hours of daily care per resident. At the best-staffed homes (five stars), only 4 of 10 residents are on Medicaid, meaning the remainder of residents are more lucrative for those facilities. At the worst-staffed homes (one star), 7 of 10 residents are on Medicaid.

Low staffing is just one factor behind inferior quality ratings for homes that rely heavily on Medicaid, said Dr. David Gifford, senior vice president for quality and regulatory affairs at the American Health Care Association, a nursing home trade group. A home’s ability to buy medical equipment, medications and oxygen and to keep the building operating can also suffer.

The government publishes a third set of stars representing the results of health inspections. State inspectors give citations to homes that don’t protect residents from bed sores, accidents, infections and other types of harm. The third chart, below, shows how homes with more health violations usually also have more Medicaid beds. At nursing homes with worst inspection records (one star), an average 65 percent of residents are on Medicaid. Facilities with the best inspection records (five star) have an average 47 percent of residents on Medicaid.

“It’s very likely that if Medicaid payment rates freeze or decline, there would be adverse effects,” said Vincent Mor, a professor at the Brown University School of Public Health. “Nursing homes that can will get out of the Medicaid business if it’s at all possible. Those that can’t will try to keep their beds as full as possible and live with a negative margin and reduce food, reduce staff and try to struggle along.”

Mor said the Medicaid cuts might not even save the government money in the end. “When Medicaid nursing homes are poor and perform poorly, their hospitalization rate increases, and Medicare pays for those hospitalizations. If I’m a nursing home and I can barely afford my patients, I’m going to send my patients to the hospital.”

This final chart shows, by state, the percentage of nursing home residents who rely on Medicaid. In Alaska, 83 percent of nursing home residents are covered by Medicaid. Iowa is the only state where Medicaid does not cover a majority of nursing home residents.

The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing.

This article first appeared September 26, 2017 on Kaiser Health News.

By Christina Jewett

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals, sometimes sedated, restrained or confined to mesh-tented beds, a Kaiser Health News investigation shows.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help, according to more than two dozen interviews with parents, advocates and physicians in states from Maine to California.

There, they wait for beds in specialized programs that focus on treating people with autism and other developmental disabilities, or they return home once families recover from the crisis or find additional support.

Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo. His room was retrofitted so the staff could view him through a windowpane and pass a tray of food through a slot in a locked door. His mother, who felt it wasn’t safe to take him home, worried that staff “were all afraid of him … [and] not trained on his type of aggressive behaviors.”

The hospital “is the incredibly wrong place for these individuals to go in the beginning,” said Michael Cummings, the Buffalo facility’s associate medical director and a psychiatrist who worked on Ben’s case. “It’s a balancing act of trying to do the … least harm in a setting that is not meant for this situation.”

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

That same year, California’s state health planning and development department recorded acute-care hospital stays of at least a month for 60 cases of patients with an autism diagnosis. The longest were 211 and 333 days.

The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services.

“As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental health needs in children and adolescents with autism,” explained Aaron Nayfack, a developmental pediatrician at Sutter Health’s Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. “And we have nowhere near the resources in most communities to take care of these children in home settings.”

So, families struggle — with waiting lists for programs, low pay for government-supported in-home help and backlogged or ineffective crisis support. Often they’ve faced some of these challenges for years. Autism is a neurodevelopmental disorder typically diagnosed at a young age and characterized by impaired communication, difficulty with social interaction and repetitive behaviors that fall along a spectrum of mild to severe.

Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.

General hospitals “are not really equipped to handle someone who is autistic,” said Mark De Antonio, director of adolescent inpatient services at Resnick Neuropsychiatric Hospital in Los Angeles. Several times a month, he said, he hears about patients with no immediate care options being medicated and sedated as they’re held. “It’s a huge problem.”

In New Hampshire this summer, 22-year-old Alex Sanok spent a month in Exeter Hospital after he became violent at home, breaking windows and hurling objects at walls. His mother called 911, and paramedics spent half an hour trying to calm him before restraining him.

At the hospital, his wrists and ankles were strapped to an ER bed for the first week, and he spent several more weeks in a private room before he could be transferred, according to his mother, Ann Sanok. State agencies that handle developmental disabilities and mental health offered little help, she said.

As the days passed, she said, she and her husband wondered: “What if [Alex] escalates again, what are we doing to do? We were getting no answers. Everyone seemed to kick the can down the road.”

Exeter Hospital said in a statement that its policy is not to use restraints unless there is an “imminent threat to patient or staff safety” and that any use is reviewed hourly. Sanok was moved in June to a special-needs residential school in Massachusetts, where his mother said he is doing well.

The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing. Kaiser Health News identified some of the more extreme cases through interviews with autism and disability advocates, physicians and families in California, New Hampshire, New York and six other states: Arizona, Connecticut, Maine, Maryland, Michigan and Rhode Island.

Nancy Pineles, a managing attorney with the nonprofit group Disability Rights Maryland, said a group home took one young adult to a Baltimore ER earlier this year after he hit a staff member. And that’s where he remained for several weeks before the hospital moved him to a room in its hospice wing, she said — not because he was dying, but because there was nowhere else for him to go.

Such cases have been “on the increase,” Pineles said. “People with autism and more intense behavioral needs are just being frozen out.”

In Connecticut, the head of the state’s Office of the Child Advocate told lawmakers during a hearing on disability issues in May that the problem had reached a “crisis” level.

Private-insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times more likely to go to the emergency room than peers without autism. Once there, they are 3½ times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits associated with a mental health crisis almost doubled from 2005 to 2013.

“You’re looking at an increase in unmet need,” said Nayfack, who with Stanford University colleagues documented a similar trend from 1999 to 2009 in hospital admissions for young Californians with autism. By contrast, they found, hospitalization rates held steady during that decade for children and teens with Down syndrome, cerebral palsy and other diagnoses.

Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento hospital, yet she remained there 10 months, according to Disability Rights California, an advocacy group that described her case in its 2015 annual report.

Ultimately, Mercy San Juan Medical Center went to court to demand that Stolz’s public guardian move her. The court filing noted that Stolz “previously harmed hospital staff” and that “a security officer is posted to the patient’s room 24/7.”

Although her conditions no longer required her hospitalization, they still “represent dangers to defendant and possibly to others if she were discharged to the community,” the facility contended. “There is no safe place for the client to go.”

The advocacy nonprofit helped place Stolz at a Northern California center that offered intensive behavioral therapy, recounted Katie Hornberger, its director of clients’ rights. The medical center did not respond to a request for comment, but two years after an investigator found Stolz in a bed covered by a mesh tent, the case remains vivid in Hornberger’s mind.

“I don’t believe we put people in cages,” she said.

New York Stands Out

Some of the longest hospital stays in the nation, averaging 16.5 days, occur in New York state.

James Cordone, 11, spent seven weeks in a Buffalo, N.Y., children’s hospital in a tent-like bed, with a hospital receptionist or instrument sterilization tech in his room at all times, his mother said. The difficulty families like hers face is “the dirty little secret no one wants to talk about.”

Debbie Cordone of Cheektowaga, N.Y., was a retired police dispatcher who had raised her own children when she and her husband adopted James as a toddler. Diagnosed with autism at 3, James was a boy with a bright smile who loved to cuddle, she said. At 8½, James began to grow combative. To ward off injury, the Cordones locked up their knives and forks and put away glass picture frames.

But then their son started head-banging — a problem with some children who have a severe case of autism. The Cordones’ house bears the scars of his pain, including holes in the drywall and a shattered window.

On his 9th birthday, in December 2014, James went into a rage, Cordone said. It took four adults to restrain him.

“He was trying to put his head through the window, sweating profusely,” she said. “He was not there. It was a blank stare.”

The family called 911. James was taken to the Women & Children’s Hospital of Buffalo, where he was sedated on and off for 13 days. He went home, but a fit of rage a few months later landed the young boy in the same hospital for seven weeks in March 2015. “We couldn’t ride out the storm any longer,” Cordone said.

Cordone said her son lived out those weeks in a “Posey Bed,” which resembles a child’s playpen propped on top of a hospital bed. During that time, she joined her adult children in a social media campaign to pressure her insurer to pay for intensive behavioral therapy.

The family prevailed, and James went to a center in Baltimore where staff — three counselors for his case alone — focused on his communication skills and adjusted his medication. He now lives in a group home near the Cordone family. He is “a success story,” Cordone said, albeit a rare one among children with severe autism.

“This is a crisis,” she said, “and no one is recognizing it.”

Women & Children’s Hospital of Buffalo did not return calls seeking comment.

Mary Cohen, who also lives in the Buffalo area, has endured a similar struggle as a single mother. Ben’s 6-foot-1, 240-pound presence dwarfed her petite frame.

She began locking herself in a basement room to escape his outbursts, while still monitoring him via cameras she’d installed throughout the house to make sure he was safe. As the lock-ins became more frequent, she realized, “I can’t keep going like this.” She found a nearby group home, covered by his disability and Medicaid payments, that could accommodate Ben.

On Aug. 1, 2016, it all imploded. Medication changes and an ear infection triggered a rage, Cohen said, and Ben hurt one of the staff members. Someone called 911, he was taken to the psychiatric emergency room at Erie County Medical Center, and a waiting room there is where he lived until early this summer.

“Staff was on the other side of the window watching him 24 hours around the clock,” Cohen said.

Though a 304-day stay is a record there, cases like this have surged at the hospital, said Cummings, its executive director of behavioral health. They spurred him to launch a grant-funded home-visit program aimed at keeping families with autistic children from reaching a breaking point. He and his clinical partner have counseled nearly 400 families to help manage their youngsters’ medications and find services, and their ER visits have dropped by nearly 50 percent, he said.

“It’s money best spent now, because you’re going to spend it in the end,” stressed Scott Badesch, president of the Autism Society. The organization, well aware of what Badesch calls hospital “warehousing,” is pushing lawmakers nationally to spend more on behavioral counseling and in-home support for families.

A bed finally opened up for Ben at Baltimore’s Kennedy Krieger Institute — a private, highly regarded facility that offers intensive therapy, psychiatry and family coaching. Cohen held out for a placement there, hoping the staff could turn Ben’s behavior around. The teen and his mother made the 360-mile trip in June by ambulance and plane.

“I want to do the right thing for him,” Cohen said. “Because one day I’m not going to be there for him.”

Rowdiness broke out in the long line to enter the Senate Finance Committee hearing room when hundreds of people waiting to protest the Graham-Cassidy bill discovered that only 20 or 30 people would be admitted to the hearing room.

This article first appeared September 25, 2017 on Kaiser Health News.

By Rachel Bluth

“Kill the bill, don’t kill us,” one woman screamed, inches from a U.S. Capitol Police officer’s face Monday afternoon in a marbled hallway of U.S. Capitol at the start of the one and only public hearing on the GOP’s last-ditch effort to replace the Affordable Care Act.

The protesters had begun lining up at 5:30 a.m. — some paid others to hold their places — and by 2 p.m., hundreds of people were waiting for a coveted seat for the Senate Finance Committee’s hearing in Room 215 of the Dirksen Senate Office Building. Around lunchtime, Sen. Ron Wyden (D-Ore.) strolled through, passing out slices of pizza to some in line.

The line was a five-minute walk from end to end.

Dozens had come in wheelchairs. Others used walkers. Many wore the signature red T-shirts of the disability rights group ADAPT. One person was dressed as the Grim Reaper. Another wore a balloon painted like a face with extra-large eyes, so lawmakers would know “I have my eyes on them.”

“All the people down here are relying on this health care bill to not go through,” said Shaylin Sluzalis, 22, from Pennsylvania, who accompanied her sister, Britney, who has cerebral palsy.

“If it does, we are going to nursing homes and institutions where we are going to be abused, used or violated,” Shaylin Sluzalis said.

Protesters, police officers and reporters jockeyed for elbow room in the cramped space, by now hot and claustrophobic.

Rowdiness broke out in the long line when the throng discovered that congressional staffers were going to admit only 20 or 30 people — the number of public spaces in the small room reserved for a crucial hearing.

Chants started. “No cuts to Medicaid — save our liberty,” they cried, over and over.

Some hurled themselves from their wheelchairs and laid on the floor, prostrating themselves in resistance at the feet of Capitol Police.

The police, who had come equipped with fistfuls of white plastic handcuffs, began arresting those on the ground. Police carried the ones unable to walk by their arms and legs and deposited them on the floor down the hall, to be later placed back in their power chairs and taken away.

Officers screamed at journalists and onlookers to clear the area in order to escort handcuffed activists out of the building.

This was the backdrop against which the bill’s authors, Sens. Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.) made their way through the crowd to enter the hearing room’s back door to begin the proceedings. “Shame! Shame!” the protestors yelled.

As Senate Finance Committee Chairman Sen. Orrin Hatch gamely tried to call the hearing to order, chants of “No cuts to Medicaid — save our liberty” resonated from the hallway. He ordered that the door be closed.

The bill proposed by Sens. Lindsey Graham (R-SC) and Bill Cassidy (R-LA) would disrupt the existing health system more than any of the measures considered so far this year, according to supporters and critics.

This article first appeared September 22, 2017 on Kaiser Health News.

By Julie Rovner

The latest GOP effort to “repeal and replace” the Affordable Care Act is getting a lot of attention, even if its passage seems unlikely. But there is far more to the measure than its changes to rules regarding preexisting health conditions.

In fact, the bill proposed by Sens. Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.) would disrupt the existing health system more than any of the measures considered so far this year, according to supporters and critics.

For backers of the bill, that disruption is a good thing. But others are appalled. As insurance industry analyst Robert Laszewski put it in a note to clients this week, “Would you rather lose your Republican Senate seat because you couldn’t pass an Obamacare repeal-and-replace plan or because you blew up the health insurance system?”

Some of those alterations have generated little discussion but would have major impacts. Here are four unheralded changes:

— The Bill Caps Federal Funding To Medicaid

Much focus has been placed on the bill’s funding formula, which would take money from states that expanded the Medicaid program for the poor. Less notice has been paid to the fact that this bill, like some other GOP options over the summer, would, for the first time, cap overall federal Medicaid funding. The federal government has provided an open-ended funding match since the program’s creation in 1965 — meaning the federal government has provided its share of whatever states spend to care for low-income children, pregnant women, seniors and people with disabilities. More than 70 million people are covered by Medicaid, including those added as a result of the ACA.

Republicans have been pushing unsuccessfully to limit the federal government’s funding of Medicaid to states since the 1980s.

State Medicaid directors — including both Republicans and Democrats — are alarmed at the idea that something of such magnitude could be done with so little debate or consideration. “Graham-Cassidy would completely restructure the Medicaid program’s financing, which by itself is three percent of the nation’s Gross Domestic Product and 25 percent of the average state budget,” said a statement from the group.

The Congressional Budget Office estimated in June that an earlier version of the cap would reduce federal Medicaid spending 35 percent by 2036. As a result, said CBO, states would “need to … decide whether to commit more of their own resources, cut payments to health care providers and health plans, eliminate optional services, restrict eligibility for enrollment, or adopt some combination of those approaches.”

“There won’t be enough money to do what’s authorized under current law,” said Jessica Schubel of the left-leaning think tank the Center on Budget and Policy Priorities.

— The Bill Gives Unprecedented Power To The Secretary Of Health And Human Services

Republicans complained bitterly about the power delegated by Congress to the secretary of Health and Human Services in the ACA. But conservative analyst Chris Jacobs pointed out that the Graham-Cassidy bill gives the HHS secretary more power still.

The bill creates a dizzyingly complex formula for the funds now being spent on the ACA, which is intended to draw money away from wealthier states (that mostly expanded Medicaid under the health law) toward poorer ones (that mostly did not). But there is a huge loophole, noted Jacobs. The bill gives the HHS secretary authority to change the formula on his or her own.

“That’s a trillion-dollar loophole that leaves HHS bureaucrats with the ultimate say over how much money states will receive,” Jacobs wrote.

And, he said, it’s the opposite of “federalism,” or giving states more authority, which the bill’s sponsors claim to be advancing.

“Draining the swamp shouldn’t involve distributing money from Washington out to states, whether under a simple formula or executive discretion,” he wrote. “It should involve eliminating Washington’s role in doling out money entirely.”

— The Bill Cuts Off All ACA Funding After 2026

The bill would lump together all funds being spent under the health law to help people pay premiums, out-of-pocket health costs and expand Medicaid to non-disabled adults and redistribute those funds to the states in the form of block grants. States could then use that money for almost anything health-related.

What few people have noticed, however, is that those block grants end abruptly after 2026. Originally, many thought this was because of congressional budget rules that limit new programs to no more than 10 years.

In fact, those rules only say that a program cannot add to the deficit after 10 years. The block grant is paid for by ongoing taxes generated from the ACA, so there is no budget requirement to end the block grant.

The reason seems to be a desire to require Congress to come back and revisit the program. A spokesman for Cassidy said the program “just has to be reauthorized in 2026 just like the CHIP program.” CHIP is the Children’s Health Insurance Program, also created in a budget bill in 1997. Congress was supposed to reauthorize that program by the end of September, although it looks as if lawmakers will miss that deadline, despite bipartisan support.

Others, however, worry that cutting the money off after 2026 means Congress could no longer use the current funding mechanism. Instead, lawmakers would have to come up with massive cuts to other programs or new tax increases if they wanted to continue providing the money for health care.

— The Bill Could Roil The Individual Insurance Market In Some States By Banning Abortion Coverage In Private Health Plans.

In keeping a promise to anti-abortion lawmakers, the bill would prohibit all private insurance plans receiving any federal funds from providing abortion coverage.

As part of a delicate compromise that got the ACA enacted in 2010, states were given the option to ban abortion coverage in plans on their health exchanges. Half of them did.

But some states, notably California, New York and Oregon require plans they regulate to offer coverage of elective abortions.

The problem is that the deadline for insurers to opt into coverage under the ACA is next Wednesday. If Congress were to pass the bill after that, it is unclear what would happen to those plans. In California, the requirement for abortion coverage is based on the state’s Constitution, so it would be possible that no plans could be offered to people who are eligible for federal help.

“There aren’t clear answers” to what would happen if the bill becomes law in its current form and takes effect in January, said Debra Ness, president of the National Partnership for Women and Families, a reproductive rights advocacy group. “I think it’s going to create chaos.”