Jan Grigsby receives medical care at home after a series of medical complications originating from a series of strokes

Hillsboro resident Catherine Vanderzanden suffered a catastrophic stroke in August 2020 that left her paralyzed on her left side and unable to get out of bed on her own. At 85, she was forced to leave the home where she had lived with her husband of 63 years to move into an adult foster care center.

Her family paid $5,000 a month for her care until she and her husband, George, reached the monetary threshold to become eligible for long-term assistance through Medicaid. In May 2021, her family applied for benefits through the state’s Oregon Eligibility system, its integrated application for medical, food, cash and child care assistance.

They heard nothing until August when, to their dismay, Vanderzanden’s application was denied. The system had erroneously determined that she and her husband had too much money to qualify. Meanwhile, bills for her care continued to come due.

Their experience wasn’t unique. Families of Medicaid applicants, elder care lawyers and eligibility workers experienced with the Oregon Eligibility system say deficiencies with the application portal, known by the acronym ONE, and inadequate training for employees ahead of its statewide rollout left some of Oregon’s most vulnerable residents without or waiting months for the long-term care benefits they qualified for.

In Vanderzanden’s case, the state’s mistake forced her husband to run through the little savings they had. Their three daughters chipped in what they could. In total, they estimate they spent $30,000 that should have been covered by Medicaid.

“We were at our wit’s end,” daughter Karen Johnson said. “Our last resort was going to be having to move our dad into an apartment and sell his home in order to get the proceeds we needed to continue to pay for mom’s care. That’s not how the program is designed to work.”

Statewide, 1.46 million people have been approved for public assistance using the ONE system, according to data from the Department of Human Services. The department said about 190,000 receive Medicaid benefits for long-term care. It does not have data on the prevalence of erroneous denials by the ONE system.

In an effort to create a more efficient and streamlined process for obtaining public benefits, Oregon lawmakers in 2013 approved legislation to create a single, integrated application co-run by the state’s human services department and its health authority. That required a revamp of the original ONE system, which the Oregon Health Authority developed to determine eligibility for certain Medicaid programs.

Nathan Singer, director for the Oregon Eligibility program, said the revamp was necessary because the state was relying on outdated technology to process benefits and applicants were being forced to come into local offices to apply using paper applications.

As of April 2022, the total cost for the ONE system was $563 million, including spending on both the original system and new integrated platform, with the state paying about 20% of the cost and relying on federal funding to cover the rest, according to the Legislative Fiscal Office. That’s significantly more than it cost to develop its disastrous predecessor, Cover Oregon, which was supposed to serve both as a health insurance exchange and benefits enrollment portal but failed to launch after a $300 million investment.

Oregon deployed the revamped ONE system statewide in February 2021 after five months of testing in portions of the state, enabling Oregonians to apply for a range of benefits through a single application that can be submitted online, by telephone or by paper at a local office. About 50% of applications are now processed within 24 hours, according to the state.

But significant issues marred the rollout.

In a February 2022 hearing, Singer told lawmakers that more than 12,000 applications submitted through ONE were past their federal processing deadlines. As of June, the backlog had dropped to about 8,000, with applications for medical benefits, which are supposed to be processed within 45 days, making up two-thirds of that number.

Fariborz Pakseresht, director of the Department of Human Services, attributed those delays to unprecedented demand for benefits amid the pandemic. He asked lawmakers to approve hiring 328 additional staff members, contending that without them, Oregonians would face benefit delays, longer phone waits and longer application processing times, which could lead to the federal government taking corrective action. Despite the department’s plea, lawmakers denied the request.

During the hearing, Rep. Rob Nosse, D-Portland, noted that eligibility workers had raised concerns about technical issues with the system. Singer responded by reminding Nosse that ONE was the largest single IT system ever deployed by the state and said there were bound to be some hiccups. But he said the number of defects the department had seen had “significantly declined.” The hearing ended without further discussion of the technical problems.

“When you have 1.4 million people who have to utilize this system at some point in a year and you’ve only got 12,000 that are really behind in a significant way, in the grand scheme of things, that percentage is not that bad,” Nosse said. “I just want to acknowledge – that as much as this is not good – I’m delighted to hear the people you work with saying this has been one of the smoother rollouts of these that they’ve seen in the United States.”

While the department tracks processing delays on its website, it doesn’t appear to know how many applications have been processed incorrectly. Singer told The Oregonian/OregonLive that he doesn’t believe the errors are widespread.

“Every time I hear about someone not receiving critical services, I’m concerned about that,” Singer said. “We know we’re not perfect and we’re striving to make improvements around these services as we continue to support individuals.”

However, people working with Medicaid applicants in need of long-term care say faulty denials continue to be common.

Julie Meyer Rowett, a Portland-based attorney, said she no longer advises clients to use ONE’s online application portal because she has seen too many people incorrectly denied benefits by the automated system.

She said a major issue is how ONE looks at a family’s finances. Medicaid applicants can only have $2,000 in assets to be eligible for assistance. However, the federal government allows their spouses to have up to $137,400 in assets, including money saved in IRAs, so they can continue to live on their own without becoming impoverished. Meyer Rowett said the ONE system is miscalculating applicants’ assets and erroneously denying them for being over the income limit.

She has filed multiple appeals over the last year and a half with the Department of Human Services on behalf of applicants and sent a letter to Oregon’s U.S. Sens. Ron Wyden and Jeff Merkley, Gov. Kate Brown and Oregon Health Authority Director Patrick Allen last September detailing those concerns. She said she never received a response and that the problems have yet to be corrected.

Elisa Williams, a spokesperson for the Department of Human Services, told The Oregonian/OregonLive that the department did determine in June that the ONE system was calculating the resources allowed for spouses incorrectly, but said that was resulting in applicants with too many resources being approved, not erroneous denials. She said that problem was fixed in July.

Meyer Rowett, however, received a June 24 email from a ONE eligibility worker related to a pending application that noted the department was aware of systemic problems with how spouses’ assets were being counted against people needing long-term care.

“There is a known error in the system and the resource assessment calculation is not being calculated correctly,” the worker wrote. “This issue has been escalated, via our communication with policy, we have been asking for a work-around for this case. We will process the application as soon as we are able to override the system.”

Catherine Vanderzanden, left, poses with her husband, George. Vanderzanden suffered a stroke in August 2020 that left her paralyzed on her left side. When her family applied for long-term assistance through Medicaid for her through the ONE system, they were erroneously denied benefits. (Photo courtesy of Karen Johnson)

Those mistakes can have devastating consequences.

Over five months, Johnson and her sisters made dozens of calls, sent emails and had two in-person meetings at a local Department of Human Services office to try to get staff to understand that their mother had been incorrectly denied benefits. Johnson said staffers didn’t seem to have a grasp on the eligibility requirements for Medicaid’s long-term care benefits and some workers who promised to look into the error never called back. After Vanderzanden received a second denial last October, the family retained Meyer Rowett, who submitted a request for an administrative hearing in November. In January, before the case went before a judge, the department determined that Vanderzanden was eligible for care afterall and offered her benefits backdated to the summer.

However, the damage had been done. Johnson said she and other family members don’t expect to recoup the $30,000 they spent after Vanderzanden was wrongly denied federal benefits because the amount Medicaid reimburses providers is lower than the amount care centers bill patients paying out of pocket. According to the American Council on Aging, Medicaid generally pays care facilities only about 70% of what those facilities charge private payers.

For Johnson, that difference likely means that a significant amount of the savings that her father had hoped to rely on to support himself might be gone forever.

“When you’re talking about people with small amounts of resources, about someone spending $30,000 that they should have to maintain themselves in their home for the rest of their lives, it’s atrocious,” Meyer Rowett said.

An incorrect denial can also prevent an applicant from receiving the medical support they need.

Celia Hamilton, 65, applied last August for Medicaid benefits on behalf of her husband Richard Hamilton, 80, who has Parkinson’s disease. But the application was denied a month later because the ONE system failed to recognize that she was entitled to have her own resources to live on.

Shortly after the family received the denial, Richard Hamilton, who had been living in an adult care facility, was hospitalized. Due to his deteriorating condition, the facility said it wouldn’t be able to readmit him and he would have to be placed in a memory care center.

Celia Hamilton didn’t have the money to send him to that facility. Instead, she took her husband back to their Portland home, even though she knew she was ill-equipped to care for him on her own. He needed constant support, including someone to lift him out of bed, which she said was nearly impossible for her at 5-foot-3. “It was killing me,” she said.

Unlike many families seeking care, however, she had hired a lawyer early on to help her apply through ONE because English is her second language and she said it wasn’t feasible for her to apply on her own. She said the application was long and confusing and questioned how others, especially those who don’t speak English, would be able to navigate the process without a lawyer.

Her attorney, Whitney Yazzolino, wrote a plea to the Department of Human Services after Hamilton was discharged from the hospital last September. Within several days, the department corrected the error and approved him for benefits.

“The whole system isn’t geared for the people who are applying,” Yazzolino said. “It keeps me up at night thinking about how many people are going through this system who are getting denied and don’t know they have options.”

Cody Carrete worked for the state for more than eight years and served as an eligibility worker for ONE for about six months before leaving last year to become a legal assistant at a law firm that works with elderly clients. He estimates four out of five Medicaid applicants who come to the office where he works do so because they’ve run into issues with ONE.

During his time with the department, he said, he would see the automated system run an applicant’s finances overnight and spit out the wrong benefit amount or make an incorrect resources assessment before a human had ever viewed the application.

“If that information was entered incorrectly, there’s no one really checking it,” Carrete said. “The clients will just get denial letters or see increases or decreases in their benefits.”

Singer said the department has put safeguards in place to ensure that workers review denials or decreases in benefits made by the system. However, Carrete questioned whether workers were put in a good position prior to the rollout of ONE to correct mistakes that occurred.

Previously, eligibility workers had been assigned caseloads with applications for specific programs they were familiar with. But Carrete said the ONE system created “banked caseloads” that assigned workers to pick up applications from anywhere in the state related to any of the programs available. Applicants who call in for help are referred to a general hotline where they may be connected with a worker who has limited experience with their specific programs. Lawyers say that applicants calling their local offices for help have instead been directed to the state hotline.

To prepare workers for this transition, ONE leadership required them to spend five days learning about the system’s functionality and asked them to watch additional videos to supplement that, according to agency documents. Additionally, Carrete said workers were asked to take four-hour, self-guided courses in each of the main medical, food, cash and child care programs available through ONE. Agency documents indicated that those self-guided trainings could take up to seven and a half hours and required an evaluation. While Carrete commended the department for providing other detailed resources online to aid workers, he said those mandatory cross programs trainings weren’t in-depth enough to provide workers with an understanding of the rules they needed to know to handle complex cases across multiple programs.

“It’s like if you worked on combustion engines for 10 years and then all of sudden someone wants you to work on electric motors and they give you a half-day training on electric motors and then want you to go fix an electric vehicle,” Carrete said.

Singer said he believes the department provided workers with adequate training prior to the rollout of ONE. However, he admitted that human error has led to problems with some applications and said the department has continued to update its training materials and provide ongoing instruction for workers, including adding more in-depth courses on long-term care.

“The training was adequate for an initial rollout of a system of this size but only because we were always planning to continue to follow up and provide additional training,” Singer said.

But an anonymous petition circulated in March from state workers states, “We were required to determine eligibility in programs we weren’t trained in, and when we received training, it was inadequate, disjointed, and compressed in time.” The “Statement of Lost Confidence,” whose number of signatories is unknown and could be small, calls on the state to fix the ONE system.

Williams said the agency is aware of the petition and has taken steps to improve staff experience and preparation. The agency formed a committee composed of ONE leadership and workers represented by the Service Employees International Union earlier this year to suggest improvements to ONE. The agency is also launching a new staff survey in August to elicit additional feedback, Williams said.

In December 2019, 72-year-old Jan Grigsby of Milwaukie suffered a stroke that left him bedridden and made it difficult for him to swallow.

That prompted his son, Jason Grigsby, to move him into his Portland home, setting up a hospital bed in his basement. The younger Grigsby now sleeps on a cot near his dad to monitor him in case of an emergency during the night. His mother, Carol Grigsby, comes during the day to help with her husband’s care while their son works. On a normal weekday, Jason Grigsby spends only half an hour upstairs with his wife and kids after work before his mom leaves for the night and he heads back downstairs to care for his dad.

Last June, with COVID-19 vaccinations finally available, the family applied for assistance through ONE, hoping that they could hire an in-home nurse to help with Jan Grigsby’s around-the-clock care. They faced complications from the get-go.

The portal initially locked them out and then would only let them upload supporting documents from a mobile device. In August, after a worker conducted an in-home visit, the family was told by a second worker that there was no record of that visit. The next week, the family logged into ONE only to see that Jan Grigsby had been placed in the incorrect program and the application was listed as denied. On Aug. 20, the family’s lawyer, Meyer Rowett, received an email from another worker who said it appeared the application had never been reviewed for long-term care as it should have been.

Soon after, Meyer Rowett submitted a request for an administrative hearing on the grounds that the department had failed to process the application. On Oct. 18, the day the hearing was supposed to take place, Jan Grigsby’s application was finally approved.

“I don’t know how people can do this without a lawyer,” Jason Grigsby said. “It’s a daunting experience for someone trying to get help.”

— Jamie Goldberg; jgoldberg@oregonian.com; @jamiebgoldberg

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