LITTLE ROCK, Ark. -- Controversy surrounds a program that Arkansans with profound disabilities, and those affected by aging, rely on to receive their life-sustaining care in their homes instead of in an institution. A mathematical formula now interprets nurses’ assessments, giving patients the paid hours of care they receive. Some say the cuts to their hours are eliminating their ability to stay independent. Many of those add the program is the only thing that allows them to stay in their homes as it is.
Shannon Brumley's wheelchair rolls to a stop in front of a head-high pile of chopped wood. A homemade mechanical contraption, fitted with a handle and compressor is situated slightly to the side.
"I never would have imagined myself like this," Brumley said.
Sixteen years ago, Brumley would have been able to split twice as much wood in half the time, but back then he wasn't paralyzed from the neck down. Since a car crash, where two trucks collided and made Brumley collateral damage, he's had to come to terms with his life looking much different than he might have pictured.
"A spare tire came out of the back of the truck, and hit me," he said. "They put me back together the best they could."
The young man who was building a career as an electrician, had a new baby at home and lived to be outdoors had his life shattered.
"He should have never come off the ventilator but he did," Brumley's mother, Lana, said. "When we went back to see his surgeon, the doctor could not believe it. He said Shannon was a miracle."
Shannon survived, just barely, and has struggled to maintain what progress he's made through therapy and home-developed strength building routines. In the past few years, a brain hemorrhage, septicemia (a blood infection), and multiple surgeries have set him back. Each time he makes progress, he gets knocked back down. Currently, he requires IV antibiotics every six hours and constant care.
"Shannon can help you about as much as an infant. He simply can't move much. He's managed to build up some strength in his arm enough to scratch his nose. But he can't feed himself, bathe himself, or brush his teeth. When you and I go to bed at night, we can adjust if we're uncomfortable. When we wake up, we get ourselves out of bed. Shannon just has to lie there and wait for someone."
Through the ARChoices program, Shannon receives his care at home. Lana is able to work as his paid caregiver, so that he can have those supports, retain some independence, and plan for the future.
"We're getting older. There's going to come a time when we won't be able to do it," Lana said. "We applied for the program so he would already be part of it, that way if our health started giving out, he'd have a way to hire someone to come in and help. All he receives is small disability payments, so there'd be no way he could afford the help on his home. And the last thing any of us want is for him to have to go to a nursing home."
Shannon is not only Lana's son, but he's a father to a 17-year-old boy.
"I've had sole custody of him since he was in 6th grade," Shannon said. "We love to go hunting, fishing. I want to be here for my family, my son. I wouldn't have that if I had to live in a nursing home. Family comes to visit, but it's not like getting to see them every day."
A Formula for Care
Eight thousand Arkansans with profound disabilities, and others dealing with the effects of advancing age, rely on the ARChoices program to keep them in the community and in their homes. The program is funded through Medicaid, reimbursing either family members who work as caregivers or allowing clients to hire home aides through agencies across the state. Home and community based services come at a cost-savings for Arkansas, and most states, with nursing homes costing anywhere from double to triple the cost of home service programs.
In January 2016, the Arkansas Department of Human services began using a new technique to award hours to people like Shannon. In the past, a nurse would assess clients every year. The nurse would ask a series of questions, known as the ArPath, to determine a patient's needs. Then if the assessment indicated, say 5 hours, the nurse could use discretion and adjust that up to the amount he or she felt was necessary to adequately meet the needs of the patient.
"It was important to make sure beneficiaries were assessed fairly and objectively," said Craig Cloud, who is the director of the Division on Adult and Aging Services (DAAS) that implemented the new technique.
The new technique eliminated that discretion in adjusting hours for patients. Instead, ArPath was paired with a computer-coded mathematical formula, or algorithm, to automatically determine the hours a person would receive.
The ArPath consists of more than 280 questions about patients' health and abilities. A nurse visits the home, observes what a patient can or can't accomplish, and then fills in the questions based on a person's needs. The answers to those questions run through the algorithm and place people into categories, or resource utilization groups (RUGS). Each RUG has a predetermined amount of hours that a person within that group gets, with little variation up or down.
"I know there are some who may not have agreed with the outcome or the output, but I believe we are doing the best job possible for our beneficiaries to protect their health and safety and allow us to ensure they can live at home as long as safely possible," Cloud said.
According to Cloud, DHS was motivated to eliminate nurse discretion on the number of hours allocated to ensure equal outcomes across the state. So, a nurse assessing a patient in Fort Smith with a certain set of conditions and needs would award the same amount of hours as a nurse assessing a similar patient in Jonesboro. While Cloud placed the emphasis on the need for objectivity and uniformity, he noted that there had been no formal complaints filed about the old system, nor had there been any formal concerns documented to prompt the change.
"No ma'am. The motivation was so we can make sure all beneficiaries regardless of where they live or who does the assessment - we can prove they are treated fairly. It's important that we're using an objective tool based on assessing specific needs of the beneficiary that renders an output that allows us to match the needs and services of the beneficiaries."
Nurses, Craig said, also use their professional judgment in answering the questions - observing patients' environments, watching how they're able to perform daily functions, and use their best judgment to make sure patients' needs are accurately captured in the assessment process.
Despite the apparent good intentions, patients under the ARChoices program have sued the state, alleging the process is unfair and flawed.
"We really haven't seen much good come from the algorithm," said Julie Howe, staff attorney with the Center for Arkansas Legal Services. "About 4,000 people across the state of Arkansas have been affected by reductions under the ARChoices program."
According to the Center for Arkansas Legal Services and Legal Aid of Arkansas, dozens of ARChoices clients, including Shannon Brumley, contacted them after the first assessment using the algorithm, because their hours had been drastically cut or eliminated altogether.
"We had one gentleman come to us -- he's 103 years old," Howe said. "In 2016 he was re-evaluated by DHS, and they determined that he no longer qualified for the program. They determined he could eat, toilet, and transfer independently. He had been on the program since 2004. We were able to get him a reassessment, and they determined that his cognitive functioning had declined significantly in about 2 months. They then awarded him 94 hours a month in benefits. He had been receiving 156 hours a month, but at least we were able to get some of his hours restored."
Shannon Brumley had been receiving 56 hours a week, or eight hours a day, under the old system. However, when he was reassessed in 2016, his hours were cut . According to the assessment, Shannon's needs required 37 hours a week, or five hours a day of care. It represented a 35 percent decrease. Brumley had his hours restored following an appeal to DHS where he was represented by Legal Aid. But each year poses uncertainty under the reassessment.
"For a quadriplegic who can do nothing for himself, even eight hours a day is minimal. Cut to 37 hours, that's just sorry," Brumley said. "I wish they [DHS officials] had to be in my position. One week. Go live my life for one week. They wouldn't push this."
According to Lana Brumley, the family is not so much worried about the money she is paid as a caregiver, but the loss of hours Shannon would receive if she's no longer able to care for him as her own health declines.
"I worry a lot about Shannon," she said, struggling to hold back tears. "I think I worry more about what will happen when we're not here to care for him anymore. I really don't want him to go into a nursing home. And it's not just Shannon, there are all those others who are affected the same way."
Cloud pointed out that while some people experienced cuts, a number of people also experienced increases. However, DHS has been unable to provide current data to show how many people are currently in each RUG, how many hours individuals received prior to the implementation of the algorithm, and how many they receive currently.
DHS notes that anyone who is displeased with their hour allocation can appeal the decision in an administrative process.
"All beneficiaries have the ability to file an appeal," Cloud said. "If they do not agree with that result there's an objective hearing, fair and impartial hearing."
But according to Howe, individuals need to act quickly following their assessment to prevent those reduced hours from going into effect.
"If you file your appeal within 10 days - you can continue receiving your services at the current level - if you wait til the 10 days they will be reduced down while there is an appeal pending," she said.
However, those who fail to win on their appeal may end up owing any "overpayment" of benefits that they receive. That is, if the administrative hearing is in favor of DHS, clients could face paying back the difference of the services they received versus the hours they were allocated. According to DHS statistics, between Jan. 1, 2016, and Sept. 2016, just nine of nearly 200 appeals went in favor of the client. All of those, according to Legal Aid, were represented by Legal Aid or Center for Arkansas Legal Services.
Over the years, Shannon has found ways to overcome the obstacles and find his own version of a quality life. In large part, he'd admit, he thanks the Medicaid program for helping him to remain at home. But if the cuts were to keep coming to his hours, he's afraid he and others may end up having to leave home behind.
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