- THE DIFFERENCE BETWEEN LIFE AND DEATH: That's what Shannon Brumley says a change in the hours of in-home care he receives through Medicaid could mean.
Some 4,000 disabled and elderly Arkansans who rely on a Medicaid waiver program to receive in-home services have seen their benefits cut by the state Department of Human Services due to an unannounced rule change.
The waiver provides attendant care, where someone helps a patient dress, bathe, eat and take medication. This in-home care allows elderly and disabled Medicaid recipients to avoid going to a nursing home for care.
"You will continue to have the same services," Craig Cloud, director of the DHS' Division of Aging and Adult Services, had written in a letter sent to beneficiaries of two Medicaid waiver programs near the end of 2015 announcing their combination into a single new one named ARChoices.
For some elderly and disabled Arkansans, that has proved true. But many others have seen their hours of in-home care reduced significantly.
Legal Aid of Arkansas filed state and federal lawsuits on behalf of waiver recipients who object to the change from DHS. Legal Aid prevailed in one suit. In a judgment entered last November, U.S. District Judge D. Price Marshall agreed that recipients were not given proper notice from the DHS that a change in allocation of Medicaid hours would occur, nor the reason for that change.
Marshall said in a ruling from the bench that the DHS did not give enough information "to allow a man on the street or a woman on the street to understand why the benefits were changing."
However, Marshall did not rule that the new method that the DHS is using to allocate hours is itself illegal. He simply said that the DHS needed to provide more information and notice before making the change.
Because Marshall stopped short of blocking the implementation of the new program more broadly, Legal Aid, on behalf of seven recipients, sued in state court in January 2017. On Feb. 6, Pulaski County Circuit Judge Wendell Griffen issued a temporary injunction, halting the hour changes for only the seven recipients involved in the lawsuit. The DHS appealed that ruling and the Arkansas Supreme Court is set to hear the appeal Oct. 26. A full trial in Griffen's court will follow.
Medicaid waivers that allow for in-home care save Arkansas a lot of money and, experts say, could save the state a lot more. The DHS estimates that it spends on average about $8,500 on waiver services vs. about $47,500 on nursing homes per patient per year. Seventy percent of the funds for Medicaid comes from the federal government and 30 percent from the state of Arkansas. Still, the gaping disparity in costs is why The Stephen Group, when conducting a review for the Health Reform Legislative Task Force in Arkansas, said the state's spending of Medicaid money on long-term care was too weighted toward nursing homes. Arkansas currently spends 35 percent of its Medicaid funding on patients who receive long-term in-home care, whereas the national average is 50 percent.
"If the Arkansas Medicaid program were to shift its expenditures on [long-term service care] such that expenditures on community-based represented 50 percent ... the Arkansas Medicaid program could recognize almost $200 million in annual, all-funds savings by 2021," The Stephen Group concluded in its report.
The DHS agrees that a shift toward in-home care is necessary.
"It is less costly, but it is also just better generally for individuals to be in a familiar home-like setting," Amy Webb, a spokeswoman for the DHS, said. "[In] an environment that makes them feel comfortable, they seem to do better, have a better quality of life, and are more likely to live longer and to live healthier."
ARChoices was created in this light as a way to save money and provide better care. Per recipient, it's estimated to cost $18,170 vs. $50,100 cost for a nursing home, according to the DHS.
Because of the assurance of the "same services" in Cloud's letter, Shannon Brumley, 44, a quadriplegic who had been receiving in-home care via Medicaid for six years, did not expect a change when he was notified about ARChoices in 2015.
Not announced in Cloud's letter was a substantial, if seemingly technical, change in how the DHS calculates the number of hours of care that waiver recipients receive on ARChoices.
Before ARChoices, a nurse would administer a long survey — called the ARPath assessment tool — that would estimate the numbers of hours that a waiver recipient should receive based on physical needs. Then, the nurse would have discretion to assign hours based on her experience in providing care.
For example, under the old rules, if Brumley answered the survey about his health and was allocated five hours a day, but the nurse knew he needed more, the nurse would be able to bump it up to eight hours.
Under ARChoices, a nurse has no discretion. After taking the survey about health, a patient is put into a tier of care by an assessment algorithm. The new algorithm compares the needs of all ARChoices recepients and assigns each one to a tier based on who needs the most and least attention considering the resources available to the DHS.
With the change, Brumley's hours were slated to drop considerably.
"They were going to cut my hours from 56 hours a week to 32 hours a week," Brumley said. "It's the difference between staying in soiled clothes and staying in fresh clothes. Getting a shower or not getting a shower. Getting fed or not getting fed. I mean it's the difference between, really, life and death."
Brumley is not a plaintiff in Legal Aid's state lawsuit, but he did seek help from Legal Aid in appealing the change in hours. So far his hours have not been cut.
Since the DHS relied solely on the algorithm, Legal Aid's suit asked the DHS to provide the data on how it determined hours for each tier. The DHS said it lost that data. Kevin De Liban, a Legal Aid staff attorney, also sought internal memos that would address the decision to do away with nurses' discretion — giving a motivation for the action — but he was told there were none. In response to that request, the DHS said some nurses had complained about certain patients getting too many hours. De Liban also asked if there was a study run by the DHS to see what would happen when the implementation took place. There were "absolutely zero metrics to measure how many people it's going to impact," De Liban said.
The DHS contends that a large number of beneficiaries had their hours go up, too — an estimated 42 percent compared to 47 percent who had their hours cut.
But, there is no data to indicate the magnitude of the change in either direction. The DHS has not tracked the degree to which hours increased or decreased.
There should have been notice given and time to comment on the changes before they were made, De Liban said.
"They can't just decide, 'OK, one day, people are going to be decided according to nurse discretion and another day according to an algorithm.' ... If the state does something, but they adopted it without using the proper procedures, what they're doing is invalid," he said. The DHS has conceded that its notification effort was flawed, but says the new rule is proper.
"The [federal Marshall ruling] on this issue found the algorithm itself is valid [as] a tool. The court took exception to the notice we provided to beneficiaries," Webb said. "We have made improvements to our notices based on that case and are confident that the ARChoices tool is working appropriately and people are being assigned the level of care that best meets their needs."
The DHS has argued that the efforts were about standardization, and that, despite the lack of notice, it helps people on the program.
"We knew there would be changes for some individuals because, again, this assessment is much more objective," Webb said. "Before you had mostly nurses who were providing the assessments, and based on their personal experience and knowledge with similar patients they might say, 'Oh this individual needs 10 hours.' For the same patient, another nurse might say, 'This person needs 15 hours for the week.' Because we use an algorithm that assigns people based on similarities with others in a group, it's just, again, much less subjective."
Beneficiaries can also appeal the change in their waivers to the DHS administration. But such an appeal, De Liban points out, does not challenge the use of the algorithm as a method, only if it was properly applied.
"We've had, in the last few months, a dozen or maybe more hearings for individuals who are not part of the seven plaintiffs who are having to fight those cuts through the administrative process. The vast majority are losing," he said.
Brumley — who describes himself as a "44-year-old country boy" on his blog — has been able to hold off cuts by appealing his decision within the DHS's appeal process. In-home care, Brumley said, has been essential to his progress after a devastating motorcycle accident in 2001.
He did not die in the wreck, but it was close: He broke his neck and spine in 10 places, his lungs and brain were badly damaged, and his limbs were paralyzed. "The first two years, all we worried about was, 'Is he going to make it?' " Lana Brumley, his mother, told the Arkansas Times. The family shuttled Brumley to over 30 doctors in Memphis, and Brumley moved back in with his family on their farm in Lawrence County near Walnut Ridge. "If he needs anything, I'm right there all the time for him," she said. "If he was in a nursing home [during the first two years], he would have died."
The accident altered Shannon Brumley's life in profound ways. "I had to go from independent to totally dependent," he said. "Can't brush my teeth, can't brush my hair. I can't bathe myself. I can't use the bathroom myself. I can't feed myself." But, someone needed to. "His life totally changed and so did ours, our whole family," Lana Brumley said. Her job became making sure her son could live. And not just survive but live a full life.
The family rigged the entire house to accommodate him and his wheelchair. He writes poems on his computer, updating his blog by using a mouth stick to hit the keys. So Brumley won't develop bed sores, his family adapted their schedules to ensure that he's turned every few hours — an intricate process that must be done delicately, so as not to cause Brumley any pain. Lana even set up a baby monitor to hear Brumley from another room. And Brumley's father adapted the wheelchair to hold a gun — "I bite and it pulls the trigger," Brumley said — allowing the Brumley boys, including Shannon Brumley's now 17-year-old son, to go hunting together.
But this care is expensive. Lana Brumley pointed this reporter toward the cushion on his wheelchair: $2,500 and not covered by insurance. "You go buy stuff for him, and the price is going to increase by four times [a normal item]," she said. "You're so worried about, 'Am I going to have the money for this? Am I going to have the money for that?' "
And new problems have occurred: a brain hemorrhage led to paralysis on the right side of Brumley's body, an antibiotic proved toxic, and there have been infections.
"It's a never-ending thing," Lana Brumley said of the subsequent health challenges and costs that grow from a single tragedy like her son's motorcycle accident.
After the accident, days became complex dives into the heart of American medicine, Lana Brumley said. They would go to a doctor and have to learn new phrases and terms and diseases. Then, she'd learn about the intricacies of health insurance, looking for some way to pay for it all. "You just love him, you just take care of him," Lana Brumley said. "You're trying to get the necessities that they need."
Six years ago, the costs became too high. "Financially, he couldn't afford it," Lana said, "That enabled him to be able to get Medicaid." Before that, he had been paying through his own insurance.
The Legal Aid state lawsuit hinges, mostly, on the idea of notice: Were waiver recipients properly informed of a changed?
But for Lana Brumley that issue is secondary. The new rules are unfair, she says. "Somebody like Shannon requires around-the-clock care, but if eight [hours per day] is the most you can get — for somebody in that bad of shape — give it to them," Lana Brumley said, referencing the eight hours per day her son receives vs. the approximately five hours per day the ARChoices algorithm says he should receive. "Why wouldn't you give it to them? Our government can do so much more, our state can do so much more by providing for the family members to take care at home, or allow them to hire somebody to come in."