FAYETTEVILLE, Ark. — Individuals with profound disabilities and those growing older who want to remain at home say the ARChoices program allows them to stay in the community instead of an institution. But they also say a new assessment system implemented by the state has cut their hours unfairly. KARK has become aware of problems in the code, which DHS knows exist. So, we ask the state what it’s plans are to fix it. 

Annette Koonce is no stranger to loss. In 1985 her husband and daughter were killed by a drunk driver. 

“I lost half my family in 24 hours,” she said. At 39 years old, she was a widow with a 16-year-old daughter, Deborah, who she would come to rely on. “Deb says that day was the end of her childhood.” 

For years, Annette had managed to stay mobile and live an independent life with cerebral palsy using crutches. She had the condition since birth, but persevered. Graduating college, getting married, becoming a mother and traveling the world. But in 1996, she lost the use of her legs, her ability to work or care for herself. 

“If so many things have been taken away from you physically – living in your own home is a true gift,” she said. 

And she has received that gift through the ARChoices program, which allows Deb to serve as her paid caregiver, so Annette can afford to stay at home and receive the care she needs. But in 2016, she said she experienced another loss through a cut in her home-care hours provided by Medicaid due to a new assessment system implemented by DHS. 

Nurses answer a 280 question assessment, where the answers are then run through a mathematical formula – or algorithm – to assign the hours she and others with profound disabilities are awarded. Annette had been receiving 56 hours a week, or 8 hours a day. It had been the maximum amount a person could receive under the old system. When the new algorithm was implemented, however, her hours dropped from 56 hours a week to 32, leaving the family struggling to make ends meet and Deb having to consider taking a second job to pay the bills. 

“A loss is a terrible thing to bear. and having my home here is something I can’t lose,” Koonce said. 

The Department of Human Services has said the algorithm is objective and reliable. But cerebral palsy patients like Annette and Tammy Dobbs are doubting it.

“They’ve just ruined our life by cutting that,” Tammy Dobbs said.

Dobbs also saw her hours get derailed under the assessment, cut by nearly 20 hours a week under the new system. She lived under the reduced hours for months with appeals pending. 

“Some things I didn’t get to do…like bathing. I didn’t get to bathe as often as I would like,” she said. 

Both Annette and Tammy were able to have their hours restored by filing appeals with Legal Aid. However, another reassessment comes annually, and they’re afraid their hours will be cut once again. In the meantime, lawsuits over the system have been ongoing. Legal Aid of Arkansas has challenged the state agency’s use of the system, from notice and rule-making.

“The algorithm operates in all these arbitrary ways where you know little scoring differences can mean the difference of huge numbers of hours,” Legal Aid attorney Kevin De Liban said. 

On August 10, Legal Aid of Arkansas sent a letter to DHS highlighting another issue following an appeal for client Shannon Brumley, whose hours had also been reduced under the program for the second year in a row. According to the letter sent by Legal Aid, the code lacked the ability to capture septicemia, and they believed the issue might also extend to cerebral palsy and internal bleeding. 

“The nurse could put it in and DHS software wasn’t counting it,” De Liban said. 

Craig Cloud oversaw the rollout of the new assessment system in 2016 for DHS. So, this reporter asked about these problems in the code and what DHS was doing to fix it. We asked Cloud twice if he was aware of any problems being raised about the code not accurately capturing cerebral palsy or other conditions. 

“I’m not in a position to comment about something I don’t know about, until that’s actually presented to me,” he said the second time we asked. The third time, we asked accompanied by emails KARK had obtained. 

According to those emails, which included Cloud, DHS staff discussed the assessment and how it was not capturing cerebral palsy. The code also was not capturing septicemia as alleged by Legal Aid.

“If the assessment isn’t capturing CP – those emails – and you’re part of the strand – indicate they’re not – then the outputs aren’t accurate are they? ” this reporter asked Cloud. 

After flipping through several pages of the email Craig did acknowledge that he was aware of the conversation about the issue saying, “It’s part of our continual, objective review, of the waiver and the output, and ensuring services and those determinations are correct for the individuals that we’re serving. I want to make sure I have the ability to review them in context. I don’t want to unnecessarily state that we’re treating one class of individuals different than another. I believe and stand by the objectivity of our assessment. “

Cloud said the outcomes are reliable even with the code error, because nurses answer questions not only on diagnosis but daily living needs like patients’ ability to walk and take themselves to the bathroom. The nurses’ observations can inform the way they answer the questions.

“While it may not specifically focus on one diagnosis, as you mentioned, I believe as you begin to look through that tool – it allows us to asses needs that individuals with CP might have,” Cloud said. 

But emails from September between Cloud and others show if CP had been captured, more than 150 people including Annette Koonce would have had a higher number of hours. The possible increase was an average of 25 more care hours a month. Roughly 50 people would have seen their hours decrease, and another 140 people like Tammy Dobbs would have seen no change. 

“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 to meet the needs of our beneficiaries,” Cloud said. “As the needs increase – we need to make sure we are using our resources in the most appropriate manner to allow us to effectively meet the varying needs of our beneficiaries across the state. As those needs increase, it’s important to make sure we’re using the most objective ways to match needs and services of our individuals.”

Emails show Cloud and DHS staff considered a number of options when they became aware of the issue. One suggestion was only applying the fix to those individuals who had appealed and lost, because those who had not appealed were seen to have effectively waived their right to challenge the assessment. Cloud had responded that he believed this option was fair.

A day later the same staffer who had made the appeals suggestion then changed course and suggested treating the problem as a “recall.” That staffer said he believed it was the right thing to do since DHS had effectively been put on notice that, “there are individuals who did not receive the services they actually needed.” The staffer, Mitchell Harlan, added that “taking overly corrective action may place DHS on the right side of the story” although he would “understand if the burden on the budget might be too great to justify the decision.”

“I don’t want to say we have different outcomes. It’s a matter of reviewing the results. It’s a matter of assessing the results,” Cloud said. 

In a later written response to requests for clarification, DHS contends that the estimate in the email in regard to hours may not be correct, because those individuals weren’t run through the entire assessment by the vendor. Furthermore, DHS says it is currently working with the vendor to create a patch for the code problem. That patch has not been installed, because DHS wants to make sure it is properly vetted. When it is properly vetted, those individuals impacted by the code error will be re-assessed and their hours will be adjusted based on that new assessment. 

No matter which way DHS looks at it, people like Annette say an extra 25 hours a month of care can be the difference between life in her home or life in a nursing home. 

“I want to be home. I don’t want to lose that. If I lost that, I think I’d lose hope,” she said. “This program allows you to have that choice. Choices are already limited, so at least you have that choice.”

Amy Webb with the Arkansas Department of Human Services stated: 

This assessment is designed to determine a client’s level of care needed by looking at a client’s functional abilities in life not simply the client’s diagnosis as people with the same condition can have different levels of need.  

DHS is aware that the assessment tool is not recognizing the diagnostic code for Cerebral Palsy. Our staff identified the issue and determined that the algorithm the system uses had been updated to search for ICD-10 codes except in the case of Cerebral Palsy. For that diagnosis, the algorithm is still searching for the older ICD-9 code, which is no longer in use. We have reached out to our contractor so that it can develop a fix and also to determine exactly how many individuals may have been impacted.  

Based on our initial review, we believe this to be an isolated issue and that overall the system is working as it should to objectively assess the level of need for ARChoices clients. It’s important to note that the diagnostic code is only a small piece of what the algorithm uses to determine the level of care and RUG assignment.

The algorithm also takes into account information the client provides about how he or she handles tasks of daily living, like walking, bathing and feeding themselves. Those pieces of the algorithm are working well.

We take this issue very seriously because we know how important the ARChoices program is for individuals and families across the state. Once our staff discovered a potential issue in September, we reached out to our contractor and asked that it verify there was a problem.

The contractor, Center for Information Management (CIM), has been working to verify that an issue existed and confirmed that there was an error related to the ICD-10 code being recognized in some RUG levels for cerebral palsy and sepsis (the sepsis issue had not adverse impact on any individuals). CIM’s error is not pervasive and the contractor is currently testing a patch to fix it. We have asked that it not be installed until it has been thoroughly vetted.

As soon as it is installed and all of our nurses update their software, we will run all the identified individuals back through the assessment and quickly adjust the hours for any impacted individuals. (Note that the spreadsheet that you may have gotten with an email listing the differences may not be accurate because CIM did only an informal calculation and did not run individuals back through the entire assessment.) DHS will run the individuals back through the full assessment. We can provide you de-identified information once we have it.
At the same time, we have our procurement office reviewing the contract to determine what adverse action, if any, we should take against the contractor because of this issue. We want to do everything we can to get this right for the people who need these state-funded services.
As you know, we are moving forward with a new assessment that other divisions are already using. The great thing about the new assessment is that it can be used for multiple populations – for people with developmental disabilities, mental health issues and those who are aging and physically disabled. That helps because people often have multiple issues and don’t just fit in one category of need. We are working now to ensure the assessment works well and will move to the new assessment next year. 

In regard to how DHS knows the “ADL functions” of the algorithm are working appropriately and whether that was based on analysis or reports run by DHS or CIM, Webb responded: 

It is based on our experience with the system to date. There have been no other anomalies identified by us or our contractor, which gives us confidence that overall this system is working as it should. And please know that we want this to work well, too. Our nurses and staff interact with these families. They visit their homes and they know that this program helps people maintain their independence and stay in their homes. That’s why we choose such a thorough assessment – and one that requires a nurse to sit down with clients and observe their needs and situation – because we knew it would help ensure they received the right level of funded hours to meet their needs.