Delays and convoluted policies that have plagued Colorado Medicaid for years are violating the rights of people with disabilities, according to a federal complaint against the program.
Colorado Medicaid, a government-funded insurance program for people with low incomes or severe disabilities, is failing to comply with the federal Americans with Disabilities Act, according to the civil rights complaint from the Colorado Center on Law and Policy and the National Health Law Program.
The state program, within the Colorado Department of Health Care Policy and Financing, is letting people slip through the cracks as it revamps its case management policies and its computer system, the complaint alleges. The changes are coming at a time when the Medicaid division has been overwhelmed with redetermining people’s eligibility, which was not required during a three-year pause during the coronavirus pandemic.
The complaint filed last week asks two federal agencies — the U.S. Department of Health and Human Services Office for Civil Rights and the U.S. Department of Justice — to take immediate action to help Coloradans. And they want the state Medicaid division to stop terminating services for people with disabilities until case management issues and computer system problems have been resolved.
These are people who are vulnerable.
— Bethany Pray, Colorado Center on Law and Policy
“These are people who are vulnerable,” said Bethany Pray, deputy director at the Colorado Center on Law and Policy. “They really need to have a case manager who knows what’s happening with them and is making sure they’re getting the services they need to stay healthy.”
Lene Jaqua is among the parents whose children have received letters in recent weeks notifying them they were no longer eligible for Medicaid.
Jaqua’s son, 27, has been on a Medicaid program called a “supported living services waiver” since he became an adult. He lives with Jaqua, 62, and the waiver pays for the day program where he spends weekdays while she is working.
At this point, Jaqua and her mom friends have had enough letters with bad news from Colorado Medicaid that her stomach sinks when she sees one in the mailbox. It’s almost always a documentation issue, one that takes her days to sort out so that her son, who has Down syndrome, was born with a heart defect, a cleft lip and palate, and uses an assisted technology device to communicate, can continue receiving services. Sometimes, she doesn’t open it until the next morning, in order to gather the fortitude to deal with it.
The latest letter was in her mailbox Feb. 19. Her son was being kicked off Medicaid, it said, though there was no explanation about what paperwork she was missing.
“The letter is six or seven pages and full of gobbledygook,” she said. “I have a Ph.D. in nuclear physics and I don’t understand this letter.”
This time, it turned out that her son’s file was missing a document called a “level of care determination,” even though his case manager had sent it every year. Jaqua believes that the state’s computer program, not a live person, sorted through her son’s file, did not connect all the required documents, entered incorrect information about his income, and generated the letter notifying him he was no longer eligible. She was able to solve the issue by taking two days off work and having multiple conversations with her son’s case manager and Jefferson County Human Services.
In the process, Jaqua realized the problems were widespread. Six other families at her son’s day program were going through the same thing, as were two out of 12 moms in a chat group who have been supporting each other through for years.
Jaqua doesn’t blame anyone in particular, just the underfunded system that has case managers overwhelmed.
State Medicaid officials at the Colorado Department of Health Care Policy and Financing said the department “takes seriously the concerns and is committed to ensuring members receive the services for which they qualify.” Department officials, in an email to The Sun, also acknowledged that those receiving long-term services are “experiencing compounding issues” because of the ongoing policy changes and the Medicaid redeterminations.
“We are working closely with the advocacy community, members and families, Case Management Agencies, and providers to fully understand the issues that they are experiencing and to align our strategies to meet those needs,” they said.
Service delays, confusing letters come as Medicaid overhauls policies
The state last year began overhauling its case management services, a monumental undertaking to solve a longtime concern.
In the past, the same agencies that determined who was eligible for services also provided those services. For years, advocates have complained the setup was a conflict of interest and gave the agencies too much power to spend the state and federal dollars.
Under the new structure, the state is divided into 20 geographic areas and has contracts with agencies that will provide case managers to Coloradans with intellectual or developmental disabilities, brain injuries or severe mental health issues. Separate agencies will provide services.
Once the transition is complete, Coloradans will receive case management services from the agency that holds the contract in their defined service area.
The first wave of transitions took place Nov. 1. Phase two is scheduled for March 1 and phase three will start July 1.
The changes come on top of Colorado Medicaid’s giant task of determining who is eligible for its programs after the COVID pause. During the pandemic, the federal government suspended annual redeterminations because of the health crisis.
That pause ended March 31, setting in motion what states are calling the “unwind” of Medicaid benefits.
Now, staff in each of Colorado’s 64 counties are processing eligibility for all applicants, including people with disabilities who depend on long-term services and support.
The state Medicaid division’s simultaneous efforts to renew people’s eligibility while also revamping the case management system have caused Coloradans with disabilities to lose their coverage and now many are unable to access needed services and benefits, the complaint states.
“I think we’re the only state that is doing this case management redesign process simultaneously with the unwind,” said Katherine Wallat, legal director at the Colorado Center on Law and Policy.
State switches technology systems at the same time
The state Medicaid department is aware that high turnover among staff at county human services departments is causing processing backlogs, the complaint states. And the lack of adequate experience and training for county staff has had a significant impact on Medicaid renewals for people with disabilities, it says.
In addition, the state Medicaid division is hiring a new vendor for the technology it uses to document case management activities and store client documents.
Case managers have had trouble accessing clients’ historical documents in the new computer system. Only the agencies that served clients prior to the transition have retained full access to the old IT system and its full case histories of former clients, the complaint alleges.
The strain on case managers has caused some to leave their jobs, the complaint says.
And despite being aware of the problems, state Medicaid officials have continued to terminate people’s coverage over paperwork issues, the complaint states.
We need to pause those procedural terminations so that, to put it bluntly, people aren’t harmed and people don’t die because they’ve lost access to life-saving Medicaid coverage.
— Katherine Wallat, Colorado Center on Law and Policy
“We need to pause those procedural terminations so that, to put it bluntly, people aren’t harmed and people don’t die because they’ve lost access to life-saving Medicaid coverage that, for some of them, they use every single day,” Wallat said.
“Even a small break in services, or Medicaid coverage, of a few days or weeks can be really detrimental to this population in particular.”
Medicaid officials said they have begun working on solutions, including using federal coronavirus aid to help case management agencies retain staff and address data problems. Counties are receiving extra funding to help them handle Medicaid redeterminations, and service providers can tap into “provisional payments” from the state if they are having trouble getting paid.
The department also said it has a “plan of action” with its vendor to resolve tech issues and that it is improving its “external communications.”
“It’s like being on alert. What is the next shoe that is going to drop?”
The in-home caregivers who help Danielle Short take care of her 13-year-old son have not been paid for a month because Medicaid dropped her son’s services. Short is now paying one of them out of pocket and is hoping all of them will stick with her and can get back pay once the Medicaid program resolves the paperwork issues.
Micah Baird-Short, who has Down syndrome and survived leukemia, has been on a Medicaid program called the “children’s extensive services waiver” for about five years. Every year, Danielle Short goes through the convoluted process of proving that he still needs the services, which include caregivers who help out at home and take Micah out into the community for activities and errands.
“You prove once again that my son with Down syndrome is actually disabled,” Short said. “We have to prove that every year.”
She had a scare over the summer when Medicaid threatened to stop paying Short as her son’s nurse, which is her full-time job. The family made it through that process, which was a post-pandemic redetermination of Micah’s benefits. Then this month, despite Short’s many efforts to renew the waiver that pays for Micah’s in-home services, the benefits were cut off.
The four caregivers who help with Micah could no longer log their hours into the computer system beginning in February. Short has been told by his overwhelmed case managers that they sent the paperwork on to Denver County, but it’s not yet been processed.
Each time there is a threat of loss of services, or his services are suspended, it’s traumatic, she said. Short’s husband is a teacher in Denver Public Schools, while she cares for their son and works part-time as a Spanish interpreter.
Short wept at the thought of losing the caregivers who are helping her son thrive and her family heal.
“Even in the best of scenarios, managing all of my son’s services and providers and therapists and school needs, that is a big job,” she said. “It’s like being on alert. What is the next shoe that is going to drop? How do we make sure that we keep getting services that allow our family life to be tenable?”
Complaint asks feds to take immediate action
At the beginning of the case management overhaul, the state Medicaid division promised to ensure a smooth transition to new case managers, the complaint says. But assignments to new agencies have been “seriously flawed,” the complaint states.
The state Medicaid department prohibited the new agencies from communicating with their members except through letters the state Medicaid agency pre-approved. Then many families said they never received the communication. Those that did said the letters did not explain the implications of the change. And some who were told they could ask to keep their original case management agency did not have enough time to do so.
There has been no discussion of remediation for people already harmed by loss of coverage or lack of access to services, the complaint says.
And many people still don’t know who their case manager is, it says.
The Colorado Center on Law and Policy and the National Health Law Program are asking the federal government to pause the next phase of the case management transition, scheduled for March 1.
They also want Colorado to halt all Medicaid terminations for people receiving long-term services until the case management problems are fixed. This includes agencies being able to access patients’ complete documents, assigning clients a case manager within five days, and having sufficient staff so that one case manager has no more than 65 clients.
Historically, the state has struggled during big system changes, said Pray, from the Center on Law and Policy.
“With all the feedback about the level of pain this is causing folks, the remedies are pretty small,” she said. “The eligibility staff is working really hard. But it’s not enough.”