Problems with TennCare website leave disabled Tennesseans struggling to find in-home care

NASHVILLE, Tenn. (WSMV) - Candi Ferrell is a proud mother, and it’s understandable when you meet her youngest son, Will.

“He is an extraordinary human,” Ferrell said. “He’s a smart guy, brilliant smart. He does technology and he’s a lay minister of eight years in the Methodist Church.”

She is also a protective mother, in part because Will, who is now 35 years old, lives with cerebral palsy, and needs around-the-clock care to live a full life.

“He was born ten weeks early, struggled to breathe. A lot of respiratory and developmental issues,” Ferrell said. “It was a year in before it was determined it was cerebral palsy.”

“So, his care is personal care is this most personal it can be,” Ferrell said. “We are talking full care. Showering, dressing, eating, anything we would do here in the home.”

Ferrell said Will is an “incredibly active” adult who just wants to be part of the world; however, with no care, they can’t leave the house.

“Will can’t be the person God intended him to be when he made him,” she said.

Ferrell says that’s only half of it.

“If you don’t have even your basic needs met, you can’t get out of bed, or toilet, or eat without assistance,” she said. “And that is what we are facing at times with Will right now.”

Will, like thousands of adults with disabilities, is pre-approved through TennCare, the state of Tennessee’s Medicaid program, to receive a guaranteed number of hours of in-home care each month. In Will’s case, like many others, a family member functions like a small business and goes online to a website that TennCare oversees to hire, schedule and pay people that come into their home and provide that essential care.

In July, TennCare switched to a new company, Consumer Direct Care Network Tennessee (CDTN), to run the website and mobile app.

But Candi Ferrell says problems with the new online portal have been a disaster, keeping her from being able to hire enough people to care for Will.

“It has been a complete struggle,” she said. “Things were working smoothly before, but now it’s worse than ever before. Right now it’s taking me almost two months to hire people and fill the holes we need filled to care for Will.”

Ferrell tells WSMV4 Investigates that the problems she faces include the website crashing, documents like employment applications missing, and a lack of support personnel.

“And this is absolutely TennCare’s fault,” Ferrell said. “They made the decision to bring in a new operator, so ultimately, they are in charge. But there is no accountability within TennCare.”

Because she is unable to hire and schedule all the care providers Will needs, Ferrell has to step in and carry out tasks her body is barely able to perform anymore.

‘We would typically have four or five regularly scheduled people, some doing part-time, some doing full-time work,” Ferrell said.” But right now, I am working 19 to 20 hours a day and I am not young.”

Ferrell said she is now twice Will’s age.

“I am doing work that is physically beyond my realm, and I know that we are not alone,” she said.

Turns out Ferrell is right.

Mike Lawson, whose adult daughter Kelly lives with autism, is also struggling with managing problems with the website. However, the issue Lawson faces is getting his daughter’s personal assistant paid on time.

“My daughter’s personal assistant is a single mother of four,” Lawson said. “And her first paycheck with them was almost a month late. How is she supposed to make it like that? And she is still $600 behind in transportation reimbursement they owe her.”

Lawson fears he and others could lose the people currently providing the in-home care they have if the payment issues continue.

“It’s heartbreaking because these people are like family to us,” Lawson said. “We cannot lose her because Kelly needs support, and if our PA isn’t here, I cannot go to work.”

“It’s a lot to deal with right now,” he said. “And whenever you step up to complain or try to get someone to take accountability, I feel like stuff just falls on deaf ears.”

WSMV4 Investigates reached out to both TennCare and CDTN, wanting an on-camera interview so we could ask questions about how the website has performed since July.

Both declined our request. But in a statement emailed to WSMV4 Investigates, a TennCare spokesperson wrote in part:

“On July 1, we transitioned our fiscal employer agent (FEA) from PPL to Consumer Direct Care Network, TN following award of the contract through the competitive procurement process. We began communicating with members and workers 90 days prior to the transition. While some workers did initially experience issues with payments, particularly payments from the previous service provider, we escalated those cases and have been proactively reaching out to members to see if anyone is still experiencing these issues.

As we have told advocates and families, it is important that these issues be brought up to us as soon as possible with specific member or worker information so we can quickly resolve them and review to determine if others are similarly affected. All but two of the cases we are aware of have been resolved.”

CDTN told WSMV4 Investigates by email that it would be looking into Ferrell and Lawson’s problems and further wrote that:

“[We are] aware some families have had issues during the Fiscal Employer Agent (FEA) transition. Any time an organization, agency or company transitions from one process or program to another, there is the opportunity for issues to arise as the transition is completed. Unfortunately, CDTN is not immune to these types of transition issues…Working with the previous vendor, CDTN successfully onboarded nearly 10,000 clients and their caregivers in the approximately one-month period prior to the July 1 CDTN start date. We have provided consistent payroll since that time with no system-wide issues. CDTN pays more than 4,765 direct care workers in Tennessee accurately every other week. Any individual inconsistencies that arise are addressed directly and immediately.”

But Ashlie Seibers, a disability advocate and Director of Family Voices of Tennessee, fears that response is just an example of TennCare passing the buck and not taking responsibility for the problems families across the state are still experiencing with the website.

“TennCare’s transition to CDTN was not very clearly thought out or organized or structured in terms of how that implementation would go,” Seibers said. “And now, four months later, families with loved ones living with disabilities are paying the price.”

And while Seibers says her office is hearing a growing number of complaints about the website, TennCare, according to these families, keeps insisting nothing is wrong.

“What we hear a lot from families is that TennCare leadership hears them, and that’s about it. Nothing gets fixed,” Seibers said. “And I think that says there is a disconnect between what leadership says and what’s actually happening to families.”

Seibers says frustration with the website is just one more stressor that these families don’t need when trying to take care of their loved ones living with disabilities.

“These families are already financially, emotionally, physically exhausted,” Seibers said. “And now it’s really infuriating and heartbreaking because some have lost staff that provides that care in their home, or their caregivers aren’t getting paid.”

“It’s a situation that has really deteriorated, especially since the change, and right now, we are still not able to help families get help,” Seibers said. “And I fear, in the end, TennCare will just pass blame to their new agent CDTN.”

Lawson says all they’re asking for is care.

“Stop it! Take care of them,” Lawson said. “This is not the way this is supposed to work.”

“CDTN was supposed to come along and make things better,” Ferrell said. “But we never got trained to use the website, and it’s not working 100% correctly right now. It is systemic, and we are not isolated. I am on Facebook, and it’s happening to dozens and dozens of families, and those are just the ones speaking up.”

Ferrell goes even further with her criticism of the way TennCare is handling families that complain about the problems.

“It is just organized evil,” Ferrell said. “You get no support from TennCare, none. You get lip service, finger-pointing, no accountability.”

“We are doing a pitiful job in Tennessee of supporting our most vulnerable, and God has got to be watching,” Ferrell said. “And I will be honest, for the first time in our lives, we are considering moving out of Tennessee, the place we call home because TennCare does not seem to care for people like my son Will anymore.”

Copyright 2023 WSMV. All rights reserved.