ROGERS, Ark. — A Medicaid program allows thousands of Arkansans to remain in their homes instead of being institutionalized because of serious disabilities and effects of growing older.
In the past, nurses annually assessed patients in their homes and determined the hours of care people received. Now, nurses still come to the home, observe the environment and the patients’ conditions, but from there the nurses’ control over the outcome ends. That’s where the controversy began.
The computer-generated voice emanates from David Fisher’s laptop, telling us he is 70-years-old and has trouble standing for more than two minutes at a time. A traumatic head injury in the 80s makes it difficult for Fisher to move or speak without assistance. But when it comes to where he wants to receive care, his message is perfectly clear.
“I have been in four different nursing homes over the years – and they are all a bunch of snake pits,” Fisher said through the computer.
Fisher relies on the ARChoices program through Medicaid to pay his in-home caregiver to help with daily life.
“He cannot get up out of the chair to do anything,” said caregiver Justin Easter. “He is either in that chair or in the bed, unless I can help move him.”
David had been receiving about 47 hours of paid care a week until the Arkansas Department of Human Services began to use a computer program to award hours. Now, he receives 10 hours less a week.
“I told them it was ridiculous,” Easter said.”I told the nurse flat out. But she didn’t have the authority to change it “
According to DHS, nurses come into the home and observe the patient’s functional abilities. Caregivers or family members are allowed to be present and assist in answering questions. About 280 questions are asked that cover medical conditions, diagnoses, and the ability to accomplish life tasks like walking, toileting, eating, and bathing.
Former nurse Jane Grey is Fisher’s case manager. She said she has seen many of her clients experience cuts under the new system.
“I would say they’re doing a grave injustice to these people by cutting their hours so drastically,” she said.
Without family members to help with Fisher’s needs, his paid caregiver has put in the extra hours without pay. According to Easter, he hasn’t had a day off since January 2016.
“Why would you do that?” this reporter asked Easter.
“Just to make sure David is taken care of as best he can be. I’m not married, so I don’t have those expenses. But my parents are getting older. So, I’m trying to help them out too,” he said.
“If Justin didn’t donate his time, I’m afraid David would have to be in a nursing home,” Grey added.
The computation is admittedly complex. Nurses visit patient homes, fill in the 280 questions based on patient responses and nurse observations. The the next steps of the process begin, where the algorithm does the work.
The computer code used by the Arkansas Department of Human Services was developed by the University of Michigan and Brant Fries, Ph.D. While lawsuits by patients have been ongoing, Fries has offered testimony as to how the algorithm functions. The first step – is placing individuals into a RUG, or Resource Utilization Group. That’s accomplished by the algorithm searching the assessment for responses that indicate certain criteria that can place a patient in a hierarchal category. From there – depending on the patient’s functional level and treatments he or she receives, they are further divvied up into a specific RUG.
There are 23 of the specific RUG categories that an individual can be categorized in. If a patient were to qualify for more than one RUG, he or she is assigned to the more needy care group. Hours are assigned to each RUG by DHS. The agency said it used a vendor/consultant to use 2013-2014 billing data of Arkansas clients to determine what the number of hours for a particular RUG should be. This graph shows the breakdown of hour allocations. The way the process works, the hour allocations are generated from a case-mix of clients with similar conditions, to generate an average cost for those individuals that would end up in the same RUG.
The diagram to the right shows the process, also view here.
Once the individual’s RUG has been determined – hours are allocated. While DHS notes that hour allocations, if they seem inappropriate, can be reviewed by nurse supervisors and be tweaked up or down, it’s unclear whether that process has ever occurred for any clients. DHS has not been able to provide data to show how many people are assigned to each RUG, nor what type of hour allocation differences that meant for those assigned to the RUGS. (view full size chart here)
According to DHS, if someone is displeased or disagrees with the outcomes, they have the right to appeal.
“Each person has the opportunity to an objective, fair appeal hearing,” said Craig Cloud of DHS.
Between Jan. 1, 2016 and Sept. 2016, nearly 200 clients had appealed the decision on their hour allocation. DHS stats show that just nine of those appeals were in favor of the client. Legal Aid of Arkansas says all of those cases were clients represented by either Legal Aid or the Center for Arkansas Legal Services
“The algorithm has wreaked havoc on our clients’ lives,” said attorney Kevin De Liban with Legal Aid of Arkansas.
According to De Liban, hundreds of people have called to complain about hour cuts. Most of them, he said, have no understanding of why their hours changed. Attorneys representing clients have criticized DHS officials, saying no one within the organization actually knows how the formula functions to be able to explain which items were critical on the assessment to the new outcome.
According to Legal Aid, very few people under the algorithm would qualify for more than 37 hours. Prior to the change to the algorithm, the maximum hours someone could receive in high acuity care was 56 hours.
Now, De Liban contends, the majority of clients are limited to a maximum of 37 hours, barring especially intrusive treatments like being on a respirator, ventilator, or having a tracheotomy.
“To tell you the truth, I have not ever seen anyone receive more than 37 hours a week,” Grey said. “They have to be basically at death’s door to get more hours than 37 hours. That’s what I’ve seen. And David needs at least the 8 hours a day. It’s still not enough, but he could make due with that. He could really use more like 12 hours a day. But 37 certainly isn’t enough to meet his needs.”
Craig Cloud oversaw the new assessment roll-out at DHS, and he said knowledge of the formula isn’t necessary to understand the outcomes.
“We can compare the output and information within those assessments and very easily explain the differences,” Cloud said.
The goal was to produce objective outcomes, so that people with similar conditions received the same amount of hours.
“I believe the results that we’re generating are allowing us to provide the most fair decision,” Cloud said.
Critics say, though, that only 60 of the 280 questions factor into a client’s score. And how a nurse records a person’s needs on even one question that counts can be pivotal.
“The difference of of one point on one question out of 280 can mean the difference in 49 hours a month of care,” De Liban said.
Testimony by the code developer, Brant Fries, indicates that the questions do work with one another in specific ways. Where issues like diagnoses weigh at the front end to determine the hierarchy someone lands in, then functional ability further places them in a sub-category that ultimately becomes their “RUG” with attached hours.
According to Craig, those secondary functional capabilities are what allows DHS to make sure the hour allocations are accurate.
“Nurses use their professional training to determine someone’s actual needs,” he said. “So, the assessment doesn’t just focus on diagnosis.”
According to Fries, there can be wide variation of need, even within each RUG. So that where a RUG is assigned 33 hours, one patient labeled in that RUG might need more and another might need less. States can choose not to provide a range of hours within each RUG as a policy decision, often weighing objectivity and limited state resources against the need for flexibility for certain factors.
Each state can make decisions for how they use the code. A state can even alter the original “Standard” code to count variables differently. However, Fries noted that the more variation a state made to the code, the less it was supported by a scientific basis.
Cloud counters the critique by De Liban and others, noting that a significant number of people have received more hours under the new system. We have requested updated data to show those increases and decreases. So far, that data has not been provided.
But estimates from 2016 indicated that 4,000 people – or roughly half the program – experienced a cut from the years before. The remaining half experienced either no change or an increase. According to De Liban, that data didn’t indicate how large or small the increases were within RUGs or how individuals might have faired depending on their needs and the acuteness of their conditions.
The attorneys representing these clients in ongoing lawsuits, and case manager Jane Grey, say the people with the most severe cases are the ones that are seeing the largest cuts, from what they can tell. They say because these patients needs’ are already acute and time-consuming, as hours patients are awarded decrease the likelihood of having to leave their homes increases.
“All the people I take care of – none of them want to go to a nursing home — so please quit cutting their hours. So they can have some quality of life and continue to stay in there home. That’s what I would like to say to DHS.” Grey said.
According to Cloud, he’s not aware of anyone needing institutionalization following the assessment. He noted that clients are often approved for additional services, like respite, that can help meet their needs. Individuals must have informal supports, like family members who help fill the gaps, to qualify for respite.
If the cuts were to push people into nursing homes, the cost difference would be substantial . DHS estimates that it spends about $18,000 on a year per patient who receives home care. While nursing home care costs about $50,000 a year per individual.
“That’s tax dollars paying for that. So, it is a huge cost savings benefit,” said Julie Howe, with the Center for Arkansas Legal Services.
But Cloud noted that DHS is actually growing the program under ARChoices, extending benefits to more people and spending more money on services than it has in years past, saying the efficient use of resources through an objective system has benefited more people across the state.
In David Fisher’s case, because he relies on a paid caregiver without family supports, he isn’t entitled to respite care. If his caregiver could no longer volunteer the extra hours, Fisher said it would be unlikely that he could remain in his home. Without family to help take care of his daily needs, he’d be left to fend for himself for about 18 hours a day. Fisher cannot walk, toilet, eat, take his medicines or bathe by himself. In his opinion, it would all spell disaster: living the rest of his life in a nursing home.
“I hate those places,” he said. “They are unfit to live in.”
While a computer can make it possible for David Fisher to speak and be heard, he doesn’t think it should be what decides where and how he lives his life.
DHS stresses that the computer program alone does not determine a person’s services. The professional discretion nurses have in answering the questions on the front end based on their observations, DHS says, are a counterbalance to the strictly computer driven analysis of the code and RUGs system.