"The anxiety level is increasing on almost a daily basis," says Dan Hawkins, senior vice president of the National Association of Community Health Centers.
One community health center in New York has frozen hiring. Another in Missouri can’t get a bank loan to expand.
The nation’s 1,400 community health centers are carefully watching expenses in case the financial rescue they hope Congress delivers this week doesn’t arrive. With four days left in the government’s fiscal year, Congress has not voted on reauthorizing billions of dollars now going to community health centers and other health programs for the 2018 budget year that starts Sunday.
“The anxiety level is increasing on almost a daily basis,” said Dan Hawkins, senior vice president of the National Association of Community Health Centers (NACHC) in Washington, D.C. “There is broad support and agreement in Congress that it should get done, but we are working against a ticking clock and a crowded legislative calendar.”
For the past two weeks, the GOP’s scramble to repeal the Affordable Care Act before the month ends pushed other health care matters off the congressional agenda. That effort ended Tuesday when Senate Republicans said they would not seek a vote this week because they lacked enough support to pass the bill.
It’s not clear if lawmakers’ lighter agenda will now leave room for funding health centers or deciding other issues, such as renewing the Children’s Health Insurance Program (CHIP), which also expires Saturday. At a hearing Monday, Senate Finance Committee Chairman Orrin Hatch (R-Utah) urged his colleagues to work with the Senate’s health committee to settle the matter. NACHC officials privately express optimism that a deal might come later in October if not by Sunday.
Community health centers operate in more than 9,500 locations, serving 27 million people, according to the NACHC. They are the main source of health care for many low-income Americans — and the only source of primary care in many underserved areas.
Health centers provide preventive care, counseling, dentistry and primary care to everyone, whether or not they can pay. A sliding fee scale based on income and family size is available to patients without insurance.
In 2015, nearly 1 in 6 Medicaid beneficiaries received health center services, the Kaiser Family Foundation reported this year. (Kaiser Health News is an editorially independent program of the foundation.)
“The end result is these are people who will be locked out of health care” without new funding, Hawkins said.
Community health centers gained billions of dollars in federal revenue under the ACA, which created a special trust fund to support them from 2011 through 2015. The Community Health Center Fund was extended in 2015 for two years with an additional $3.6 billion annually.
That money represents 70 percent of all federal grants to health centers and about a fifth of their annual revenue. Medicaid reimbursements account for the largest share, about 40 percent.
One beneficiary is Pamela Richardson, a 60-year-old patient of Valley Community Healthcare in North Hollywood, Calif., who suffers from an iron absorption disorder called hereditary hemochromatosis. She was unable to get health insurance before Obamacare prohibited insurers from excluding people with preexisting medical conditions. The clinic helped her sign up for coverage through the Medi-Cal expansion.
Once Richardson was covered, she received long-delayed primary care, which revealed she had “scary high” blood pressure and a lump in one breast (which proved benign). “When you don’t have insurance you don’t get breast exams. You don’t have Pap smears,” she told a KHN reporter earlier this year. “I wish people had a little more patience with Obamacare. Once you get what’s wrong with you under control, the cost would come down.”
California has by far the most federally funded health centers and they serve 6.2 million Californians, according to CaliforniaHealth+ Advocates, which represents state clinics. They have received over $1.6 billion from 2011 through 2016 from the Community Health Center Fund, more than any other state, the Congressional Research Service reported in January.
If health centers receive no new funds for 2018, the ensuing financial crunch would cost 51,000 jobs, force the centers to close 2,800 locations and cause 9 million people to lose health care services, according to a budget document that the Health and Human Services Department gave Congress in July.
Uncertainty about what Congress will do now is already causing problems. Hawkins said his members call him and his staff every day, fretting about employment contracts, lease agreements and equipment rentals that run past Oct. 1.
Neighborhood Health in Nashville, Tenn., has federal grant money that will carry it through Jan. 31, but CEO Mary Bufwack said some of her 180 staff members live paycheck to paycheck and are getting nervous about Neighborhood’s stability.
Bufwack is worried the health center won’t receive money it needs to replace a clinic, a project now being planned.
She fears that a new doctor she recruited to join Neighborhood next June will take another job before she can get his signature on an employment contract. And she doesn’t want to do that until she’s sure about her budget.
Mostly, she worries that whatever Congress gives her will be only for one year.
“We’re already worried about next Sept. 30,” Bufwack said.
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.
Lydia Steckelberg, 18, spent a week in the emergency room at a hospital near Sacramento in May. Her family called 911 after Lydia began banging her head on the shower door at her family’s Folsom, Calif., home and saying she wanted to die. (Courtesy of Shane Steckelberg)
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.”
Ben Cohen (Courtesy of Mary Cohen)
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.”
Alex Sanok (Courtesy of Ann Sanok and Geskus Photography)
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.
Debbie Cordone installed locks on her refrigerator after her son James began to dump the contents of food and drink containers. (Nancy J. Parisi for KHN)
James damaged walls by banging his head on them, a problem that contributed to Cordone's decision to call 911 for the first time in late 2014. (Nancy J. Parisi for KHN)
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.
James Cordone lived in a mesh-covered, protective Posey Bed during his seven-week stay at the Women & Children’s Hospital of Buffalo, starting in March 2015. (Courtesy of Debbie Cordone)
“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.”
Tightening the screws on pricey imaging exams, health insurer Anthem will no longer allow many patients to get MRIs or CT scans at hospital-owned, outpatient facilities, requiring them to use independent imaging centers instead.
Anthem says the change is aimed at providing high-quality, safe care while reducing medical costs.
But critics say that imposing a blanket rule that gives preference to freestanding imaging centers is at odds with promoting quality and will lead to fragmented care for patients.
“To achieve true value, you have to have high-quality care at a good price,” said Leah Binder, president and CEO of the Leapfrog Group, a nonprofit organization that advocates for improved safety and quality at hospitals. “Anthem would be better off judging the quality of these [imaging] diagnoses” regardless of where they’re provided and setting payment accordingly, she said.
Imaging tests are generally subject to preapproval by Anthem to confirm that they’re medically necessary. Under the new policy, AIM Specialty Health, an Anthem subsidiary, will also evaluate where they should be performed. Doctors who request non-emergency outpatient MRI or CT scans that can be done at an independent imaging center rather than one owned by the hospital will be given a list of centers eligible for patient referrals.
The policy doesn’t apply to mammograms or X-rays.
In rural areas that lack at least two other non-hospital imaging centers, hospital outpatient tests will still be approved.
The new policy could save Anthem enrollees hundreds of dollars, said Lori McLaughlin, Anthem’s communications director.
“There are huge cost disparities for imaging services, depending on where members receive their diagnostic tests,” she said. “Members can save close to $1,000 out-of-pocket for some imaging services for those who haven’t met their deductible and up to $200 for those whose plans require only a copay.”
Hospital imaging is indeed pricier than imaging at freestanding centers. Average prices for MRI and CT scans ranged from 70 percent to 149 percent higher at hospitals, according to an analysis by the Healthcare Financial Management Association, a membership group for health care finance professionals.
But price isn’t the only important variable, and the perception that all imaging studies conducted by qualified providers generally yield comparable results is wrong, Binder said. A study published last year in The Spine Journal, for example, found that when a patient “secret shopper” with low back pain received MRIs at 10 imaging centers, each center reported different findings. Some missed a problem they should have found, while others detected nonexistent problems.
The Anthem policy applies to 4.5 million enrollees in individual and group plans in 13 of the 14 states in which Anthem operates, according to McLaughlin. (Self-funded employers that pay their employees’ claims directly are exempt but can incorporate it if they wish.) The insurer began phasing in the changes in July and expects to finish by March. New Hampshire is the only state without an implementation date, McLaughlin said.
This is Anthem’s second coverage change this year attracting attention. Earlier, the company came under fire for a new policy under which it will no longer pay for emergency department visits that it determines after the fact weren’t emergencies. That decision raised concerns it could discourage people who might need emergency treatment from seeking care.
Patient advocates and health care providers have also expressed concerns about the new imaging rule’s potential impact on patients.
Cancer patients who often are being treated at cancer centers within hospitals would feel the effect, noted Dr. J. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society.
“They have to go to a new outpatient facility, get the film, get it read and transmitted back to the cancer center,” Lichtenfeld said. If, as often happens, the hospital and the imaging center’s computer systems don’t talk to each other, the patient may have to bring the results back to the doctor on a CD. “For that patient who’s in a lot of stress to begin with, it adds another level of stress,” he said.
Dr. Vijay Rao, chair of the department of radiology at Thomas Jefferson University in Philadelphia, said the Anthem policy will create extra effort for hospital radiologists on a patient’s care team, who will need to review and possibly redo the imaging center’s work. Further, relying on a patient to transport the scan so that it can be put into the hospital’s electronic medical record system “leaves lots of room for error,” she said.
Anthem isn’t the only insurer trying to find a way around hospitals’ steeper outpatient imaging costs, said Lea Halim, a senior consultant at the Advisory Board, a health care research and consulting company. The Medicare program is taking steps as well, although its approach doesn’t directly influence patient care in the same way.
In recent years, hospitals have been snapping up independent physician practices, outpatient imaging and testing facilities and then charging Medicare higher hospital outpatient fees for their services. In a bid to equalize payments, in January the Medicare program reduced by 50 percent the amount it pays some hospital-owned outpatient facilities, including imaging centers, that are located away from a hospital’s campus. A further reduction is proposed for 2018.
“So Medicare is doing something that’s in a way very similar to what Anthem’s doing,” Halim said.
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.
“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 GOP's latest attempt to repeal the Affordable Care Act wobbled on Friday as Sen. John McCain (R-Ariz.) said he could not support it. But the bill known as Graham-Cassidy isn't dead yet. And whatever its fate, the long-held Republican goal it embodies — to fundamentally change how the government funds Medicaid — will survive.
Graham-Cassidy would dramatically redistribute federal funds to states. And, generally, states that expanded Medicaid — like California — stand to lose billions of dollars as that money is doled out to states that didn't — like Texas.
"For a state like California or a Massachusetts or a New York — exactly the states that might be most motivated to at least try to preserve the ACA coverage gains — those are the states that would face the deepest cuts to their federal resources," said Aviva Aron-Dine, a senior fellow with the Center on Budget and Policy Priorities.
The bill's authors said their plan gives states more flexibility to build their own health systems. But health officials in California released a strongly worded analysis on Friday, predicting dire consequences if the measure were to pass.
“Simply stated, this proposal is the most devastating of the three federal health care proposals that we have evaluated this year,” top officials from the state Department of Health Care Services wrote, emphasizing their words in italics.
They cited the significant shift in costs from the federal government to the states, forcing California to pay nearly $4.4 billion more in 2020 to maintain current coverage levels. In 2027, when the federal block grants would end, the state’s additional burden would grow to $53.1 billion, according to the analysis.
All told, from 2020 through 2027, “the impact would total $138.8 billion in federal funding cuts,” the officials wrote.
“If this amendment is adopted and becomes law, California will be faced with tens of billions of dollars in new costs, [which] will require difficult decisions regarding the populations and benefits we choose to cover and how much we pay providers and plans for the services they provide,” the health officials said.
California's overall uninsured rate dropped by more than half since the ACA's coverage expansion.
Meanwhile, Texas looks like one of the bill's big winners. It gets a windfall of more than $35 billion to help replace Obamacare exchanges and other programs, more than any other state. State officials get to decide how they want to spend that money.
But experts in the state said that could present its own set of problems.
"Regardless of the size of the block grant, there's just no assurance that it would translate into good coverage or coverage that's [as] affordable as what we have today," said Stacey Pogue, a senior policy analyst with the Center for Public Policy Priorities in Austin.
Texas has replaced California as the state with the highest number of uninsured people. Pogue said the state doesn't have the infrastructure in place to expand coverage to more people. It didn't expand Medicaid, and the state didn't set up its own Obamacare exchange.
To sell ACA policies, Texas uses healthcare.gov, which will cease to exist if Graham-Cassidy passes.
"There's no planning and no thought put into how would we create affordable coverage for low-income Texans," Pogue said. "Texas would be starting from scratch."
For comparison, it took Massachusetts four years to set up its pre-Obamacare insurance market.
Pogue said the political will needed to expand health insurance to more Texans has been lacking among state lawmakers for years. In order to get the block grant, states would need to create something workable by 2020.
Another issue is how the grants would be calculated. The federal government would pay a fixed amount, up to a cap, for each Medicaid enrollee.
"We have very low per capita costs already, and we [would] get locked into that forever," said Stacy Wilson, president of the Children's Hospital Association of Texas. "We are very concerned."
The Texas Public Policy Foundation, a conservative group, also said it was not happy about the bill. Its concern is that it doesn't go far enough to repeal Obamacare.
“In the end, this rushed legislation will not lead to the creation of a functioning free market,” said Drew White, a senior policy analyst with the group.
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.
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.”
Seeking to prevent superbug outbreaks, federal health officials said they have approved the first gastrointestinal medical scope with a disposable cap for use in the U.S.
The Food and Drug Administration said that the design of the new duodenoscope by Japanese device maker Pentax should make it easier to remove dangerous bacteria that can become trapped inside these reusable instruments.
“We believe the new disposable distal cap represents a major step toward lowering the risk of future infections associated with these devices,” said Dr. William Maisel, the acting director of the FDA’s Office of Device Evaluation, in a statement Wednesday. “We encourage companies to continue to pursue innovations that will help reduce the risk to patients.”
But some medical experts questioned whether this design change goes far enough to protect patients.
“This new scope will probably reduce the infection risk, but I’m not sure by how much,” said Lawrence Muscarella, a hospital-safety consultant in Montgomeryville, Pa.
In addition, he and other experts said, this is just one scope, and its modest redesign will not address the shortcomings that plague many different medical scopes on the market and continue to put patients at risk of antibiotic-resistant infections.
Pentax didn’t provide any details Thursday about when the new duodenoscope will be available or what it may cost. In general, duodenoscopes can cost up to $40,000 apiece, and they can represent a major expense for hospitals that handle a large volume of procedures.
In a statement, the company said “the disposable distal cap design represents a significant advancement in infection control.”
One advantage of a removable cap is that it would allow hospital cleaning staff better access to tiny crevices and small parts at the tip of the scope. Some areas are hard to reach with brushes and washing machines, increasing the risk of bacteria being passed from one patient to another.
While the scope tip has proven troublesome, experts say harmful bacteria also have been found in other areas, such as biopsy ports and instrument channels.
“I think it may be a step in the right direction to have single-use components whenever possible. But we still have gaps here,” said Cori Ofstead, a researcher and epidemiologist in St. Paul, Minn.
She and other infection-control experts are urging manufacturers and regulators to move toward sterilization for all medical scopes, which would involve gas or chemicals and be a step above the current federal requirement for high-level disinfection. That change would likely require further design changes to enable complex scopes to withstand the process.
Other device manufacturers have gone in a different direction, developing scopes that are fully disposable, rather than just enabling the cap to be thrown away. The FDA recently approved two colonoscopes that are designed to be used just once. Other companies are promoting similar devices for use in the lungs and kidneys.
Doctors put duodenoscopes down a patient's throat to diagnose and treat problems in the digestive tract, such as gallstones, cancers and blockages in the bile duct. There are about 700,000 of these ERCP procedures done annually in the U.S.
Since 2015, U.S. prosecutors, lawmakers and government regulators have been investigating dozens of infections and deaths tied to duodenoscopes.
Republican efforts in Congress to “repeal and replace” the federal Affordable Care Act are back from the dead. Again.
While the chances for this last-ditch measure appear iffy, many GOP senators are rallying around a proposal by Sens. Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.), along with Sens. Dean Heller (R-Nev.) and Ron Johnson (R-Wis.)
They are racing the clock to round up the needed 50 votes — and there are 52 Senate Republicans.
An earlier attempt to replace the ACA this summer fell just one vote short when Sens. Susan Collins (R-Maine), Lisa Murkowski (R-Alaska) and John McCain (R-Ariz.) voted against it. The latest push is setting off a massive guessing game on Capitol Hill about where the GOP can pick up the needed vote.
After Sept. 30, the end of the current fiscal year, Republicans would need 60 votes — which means eight Democrats — to pass any such legislation because special budget rules allowing approval with a simple majority will expire.
Unlike previous GOP repeal-and-replace packages that passed the House and nearly passed the Senate, the Graham-Cassidy proposal would leave in place most of the ACA taxes that generated funding to expand coverage for millions of Americans. The plan would simply give those funds as lump sums to each state. States could do almost whatever they please with them. And the Congressional Budget Office has yet to weigh in on the potential impact of the bill, although earlier estimates of similar provisions suggest premiums would go up and coverage down.
“If you believe repealing and replacing Obamacare is a good idea, this is your best and only chance to make it happen, because everything else has failed,” said Graham in unveiling the bill last week.
Here are five things to know about the latest GOP bill:
1. It would repeal most of the structure of the ACA.
The Graham-Cassidy proposal would eliminate the federal insurance exchange, healthcare.gov, along with the subsidies and tax credits that help people with low and moderate incomes — and small businesses — pay for health insurance and associated health costs. It would eliminate penalties for individuals who fail to obtain health insurance and employers who fail to provide it.
It would eliminate the tax on medical devices.
2. It would eliminate many of the popular insurance protections, including those for people with preexisting conditions, in the health law.
Under the proposal, states could “waive” rules in the law requiring insurers to provide a list of specific “essential health benefits” and mandating that premiums be the same for people regardless of their health status. That would once again expose people with preexisting health conditions to unaffordable or unavailable coverage. Republicans have consistently said they wanted to maintain these protections, which polls have shown to be popular among voters.
3. It would fundamentally restructure the Medicaid program.
Medicaid, the joint-federal health program for low-income people, currently covers more than 70 million Americans. The Graham-Cassidy proposal would end the program’s expansion under the ACA and cap funding overall, and it would redistribute the funds that had provided coverage for millions of new Medicaid enrollees. It seeks to equalize payments among states. States that did not expand Medicaid and were getting fewer federal dollars for the program would receive more money and states that did expand would see large cuts, according to the bill’s own sponsors. For example, Oklahoma would see an 88 percent increase from 2020 to 2026, while Massachusetts would see a 10 percent cut.
The proposal would also bar Planned Parenthood from getting any Medicaid funding for family planning and other reproductive health services for one year, the maximum allowed under budget rules governing this bill.
4. It’s getting mixed reviews from the states.
Sponsors of the proposal hoped for significant support from the nation’s governors as a way to help push the bill through. But, so far, the governors who are publicly supporting the measure, including Scott Walker (R-Wis.) and Doug Ducey (R-Ariz.), are being offset by opponents including Chris Sununu (R-N.H.), John Kasich (R-Ohio) and Bill Walker (I-Alaska).
On Tuesday 10 governors — five Democrats, four Republicans and Walker — sent a letter to Senate leaders urging them to pursue a more bipartisan approach. “Only open, bipartisan approaches can achieve true, lasting reforms,” said the letter.
Bill sponsor Cassidy was even taken to task publicly by his own state’s health secretary. Dr. Rebekah Gee, who was appointed by Louisiana’s Democratic governor, wrote that the bill “uniquely and disproportionately hurts Louisiana due to our recent [Medicaid] expansion and high burden of extreme poverty.”
5. The measure would come to the Senate floor with the most truncated process imaginable.
The Senate is working on its Republican-only plans under a process called “budget reconciliation,” which limits floor debate to 20 hours and prohibits a filibuster. In fact, all the time for floor debate was used up in July, when Republicans failed to advance any of several proposed overhaul plans. Senate Majority Leader Mitch McConnell (R-Ky.) could bring the bill back up anytime, but senators would immediately proceed to votes. Specifically, the next order of business would be a process called “vote-a-rama,” where votes on the bill and amendments can continue, in theory, as long as senators can stay awake to call for them.
Several senators, most notably John McCain, who cast the deciding vote to stop the process in July, have called for “regular order,” in which the bill would first be considered in the relevant committee before coming to the floor. The Senate Finance Committee, which Democrats used to write most of the ACA, has scheduled a hearing for next week. But there is not enough time for full committee consideration and a vote before the end of next week.
Meanwhile, the Congressional Budget Office said in a statement Tuesday that it could come up with an analysis by next week that would determine whether the proposal meets the requirements to be considered under the reconciliation process. But it said that more complicated questions like how many people would lose insurance under the proposal or what would happen to insurance premiums could not be answered “for at least several weeks.”
That has outraged Democrats, who are united in opposition to the measure.
“I don’t know how any senator could go home to their constituents and explain why they voted for a major bill with major consequences to so many of their people without having specific answers about how it would impact their state,” said Senate Minority Leader Chuck Schumer (D-N.Y.) on the Senate floor Tuesday.
In the wake of eight deaths a Florida nursing home following Hurricane Irma, heightened attention has focused on new federal disaster-planning rules, with which nursing homes must comply by mid-November.
It does not take a hurricane to put nursing home residents at risk when disaster strikes.
Around the country, facilities have been caught unprepared for far more mundane emergencies than the hurricanes that recently struck Florida and Houston, according to an examination of federal inspection records. Those homes rarely face severe reprimands, records show, even when inspectors identify repeated lapses.
In some cases, nursing homes failed to prepare for basic contingencies.
In one visit last May, inspectors found that an El Paso, Texas, nursing home had no plan for how to bring wheelchair-dependent people down the stairs in case of an evacuation. Inspectors in Colorado found a nursing home’s courtyard gate was locked and employees did not know the combination, inspection records show. During a fire at a Chicago facility, residents were evacuated in the wrong order, starting with the people farthest from the blaze.
Nursing home inspectors issued 2,300 violations of emergency-planning rules during the past four years. But they labeled only 20 so serious as to place residents in danger, the records show.
In addition, a third of U.S. nursing homes have been cited for another type of violation: failing to inspect their generators each week or to test them monthly. None of those violations was categorized as a major deficiency, even at 1,373 nursing facilities that were cited more than once for neglecting generator upkeep, the records show.
“That’s the essential problem with the regulatory system: It misses many issues, and even when it identifies them, it doesn’t treat them seriously enough,” said Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy. “It’s always the same story: We have some pretty good standards and we don’t enforce them.”
In the wake of eight deaths at Rehabilitation Center at Hollywood Hills, Fla., following Hurricane Irma, heightened attention has focused on new federal disaster-planning rules, with which nursing homes must comply by mid-November. Those were prompted by nursing home and hospital deaths during Hurricane Katrina in Louisiana in 2005.
Dr. David Gifford, senior vice president for quality and regulatory affairs at the American Health Care Association, a nursing home industry group, said facilities have gotten better at handling disasters after each one. Most evacuations go smoothly, he said.
“After each one of these emergencies we’ve learned and gotten better,” Gifford said.
But advocates for the elderly say enforcement of rules is as great a concern, if not greater.
Dr. David Marcozzi, a former director of the federal emergency preparedness program for health care, said that inspectors — also known as surveyors — should observe nursing home staff demonstrating their emergency plans, rather than just checking that they have been written down.
“If you have not implemented and exercised plans, they are paper tigers,” said Marcozzi, now an associate professor at the University of Maryland School of Medicine. “The emphasis from the surveyor has to be ‘Show me how you do this.’ ”
Gifford said pre-planning and drills, which are important, only go so far in chaotic events such as hurricanes.
“No matter what planning you might have, what we have learned from these emergencies is these plans don’t always work,” he said. Nursing homes take surveys seriously and face closure if they do not fix flaws inspectors identify, he added.
Inspection results vary widely by state, influenced sometimes by lax nursing homes or more assertive surveyors, or a combination, according to an analysis of two types of emergency-planning deficiencies. In California, 53 percent of nursing facilities have been cited for at least one of two types of emergency-planning deficiencies, and a quarter have been cited in Texas. No nursing home in Indiana, Mississippi or Oregon was issued violations for those two emergency-planning violations during the past four years.
Asked to explain the rarity of severe citations in emergency preparation, the federal Centers for Medicare & Medicaid Services, which oversees inspections, referred a reporter to its emergency-preparedness mission statement on its website.
The danger of high temperatures for elderly residents, which the Hollywood Hills case shows can be disastrous, has been well known. In a heat wave in 2000, two nursing home residents in a Burlingame, Calif., facility died and six others suffered severe dehydration, heat stroke or exhaustion.
During the past four years, inspectors have cited 536 nursing homes for failing to maintain comfortable and safe temperature levels for residents. Inspectors deemed 15 as serious, including two where patients were harmed, records show.
“There is undoubtedly little, if any, enforcement of the laws since we see the same tragedies repeated time and again,” said Patricia McGinnis, executive director of California Advocates for Nursing Home Reform.
Clarification: This story was updated on Sept. 19 clarify to make clear that 53 percent of nursing facilities in California and a quarter of them in Texas were cited for at least one of two types of emergency-planning deficiencies — not both types of deficiencies.
The Trump administration is cutting funding to organizations that help people enroll in health plans on the federal insurance marketplaces by as much as 90 percent.
The Trump administration says many of the organizations that help people enroll in health plans on the federal insurance marketplaces don’t provide enough bang for the buck, sometimes costing thousands of dollars to sign up each customer. So, it is cutting their funding, some by as much as 90 percent, the government told the groups last week.
But the navigators, as they’re called, say the government doesn’t understand the time involved in the effort or the complexity of the enrollment challenge. Nor do federal officials appreciate the variety of tasks that navigators are asked to handle, they say.
Some customers don’t know how to use a computer. Many don’t understand insurance lingo — what’s a deductible, anyway? — or how to pick the best plan for their needs. Consumers get confused about estimating income and determining household size to qualify for premium tax credits that are available for people with incomes up to 400 percent of the poverty level (about $98,000 for a family of four). What if you’re self-employed and have no idea how many hours of work you’ll get next year? If Grandma is a dependent, does she count as part of the household? What about mixed immigrant families, in which one member is undocumented and ineligible for health insurance? These are the types of vexing questions navigators routinely field, they say.
In addition to helping people sign up, navigators often assist them throughout the year as their income or job status changes and offer community outreach and education services. Marketplace coverage is complicated and so are people’s lives, they argue, and finding the right plan can be tough.
“You can decide on the best policy, but people come from so many different backgrounds and experiences that it’s impossible to have a policy that can be applied uniformly,” said Sabrina Corlette, a research professor at Georgetown University’s Center on Health Insurance Reforms. The center has run a technical assistance project for navigators in recent years and produced an online guide that addresses frequently asked questions.
Sandy Dimick is program director for Get Covered Tennessee, part of Family and Children’s Service, the state’s primary navigator grant recipient. She said one of the common issues that navigators there deal with is helping self-employed people estimate their income for the coming year to know if they can qualify for federal subsidies to help pay for their premiums.
“We’re in Nashville, Music City, and lots of musicians are contract workers,” she said. “They think they qualify for subsidized coverage, but by the time they deduct their expenses they may be in the Medicaid gap because we didn’t expand Medicaid here.” She was referring to people whose incomes are below 100 percent of the poverty level, the minimum amount to qualify for marketplace premium tax credits, but earn too much to qualify for Medicaid.
Navigators can also be instrumental in helping clients save money on out-of-pocket costs, she said, because the federal health law offers cost-sharing reduction subsidies for people earning up to 250 percent of the federal poverty level (about $30,000 for an individual in 2018). The subsidies may bring their deductibles down to zero, potentially saving them thousands of dollars in out-of-pocket costs, Dimick said. But many marketplace customers don’t know about the subsidy and don’t realize it’s available only if they buy a silver plan on the marketplace. Unless these people work with a navigator, they may miss out because those who are financially strapped lean toward purchasing the slightly cheaper bronze plan that doesn’t qualify for cost-sharing reductions.
Dimick said her group will lose 15 percent in federal funding on its $1.6 million grant, about the amount they had anticipated.
Helping people understand how the marketplace coverage works is an ongoing challenge, said Elisabeth Benjamin, vice president of health initiatives at the Community Service Society, New York’s largest navigator program. New York runs its own marketplace, and Benjamin said she doesn’t expect a funding cut.
“People are still struggling with the metal levels,” Benjamin said, referring to the bronze, silver, gold and platinum plan types offered on the marketplaces that pay from 60 to 90 percent of covered medical expenses. “They don’t understand that if they have premium tax credits and cost-sharing reductions they shouldn’t just lurch to the lowest-cost bronze plan.”
Erinn Garrison, a navigator in Ohio, sometimes travels to meet people at coffee shops or churches in the rural portions of the state.
“A lot of the people I work with have limited technological capability,” said Garrison, the health initiatives manager at the Ohio Association of Foodbanks in Columbus, which leads a statewide consortium of navigators. “They can’t work on a computer.”
The group’s navigator funding was cut by 71 percent for the coming year, to $485,967.
The Trump administration is taking a hard line, it says, because the navigator groups have not shown that they are providing good value. Last year, the groups received $62.5 million and enrolled 81,426 individuals. The administration said the new funding formula is based on how well each group did toward meeting its 2017 enrollment goal, but many navigator groups say there doesn’t appear to be a correlation.
The federal Centers for Medicare & Medicaid Services, which oversees the federal marketplaces, has a toll-free call center. When asked if it plans to increase staffing or undertake other enrollment activities this year, officials said, “CMS will continue to operate our year-round exchange call center to assist consumers with enrollment and as in past years we will ramp up staffing to support the higher call volume anticipated during open enrollment.”
If navigators are thin on the ground this fall, people can opt to sign up directly with insurers or brokers. The federal government plans to launch a “help on demand” tool on healthcare.gov that will connect consumers directly with agents and brokers, according to a blog post on the Health Affairs website by Timothy Jost, an emeritus professor at Washington and Lee University in Virginia and an expert on the health law. But advocates have expressed concerns that consumers may not get impartial advice from vendors who receive sales commissions for specific insurance products.
In addition to healthcare.gov, some groups have published detailed information aimed at navigators that may help intrepid consumers get answers to enrollment questions. The Georgetown navigator guide is available online, as is information from the Center on Budget and Policy Priorities.
The published CBPP information may be helpful to some individuals, but it’s not a substitute for navigators who help people one-on-one, said Judith Solomon, the center’s vice president for health policy. “It’s not boots on the ground,” she said.