Changes to payment system for certain MD caregivers causing confusion

MARYLAND – Imagine you live with, and provide full-time care for someone who has a disability. While rewarding, caregivers say it can also be exhausting, and time consuming.

Folks chosen by their family members to provide that care get funds from the state of Maryland to do so. However, they say a recent change to the pay system is causing confusion.

“The system is broken. It is just fundamentally broken,” said Michele Gregory. “I didn’t really understand it. It was difficult to navigate, interpret, and overall, incredibly confusing.”

Meet The Gregory’s

Michele Gregory is a Salisbury City Council member, a previous candidate for Maryland’s State Senate, and is extremely active in the community. On top of that, she and her husband provide full-time at-home care to their adult son, Nick.

Nick was born with a rare form of epilepsy, and is non-verbal. Gregory says developmentally, Nick is somewhere between eight and 36 months old.

“Nick is pretty dependent on both of us to be able to eat, dress, bathing, that sort of thing. Often times, it takes two of us to do a task because he is an adult,” said Gregory. “It’s very much like having a toddler in an adult’s body.”

But, Gregory says Nick is so much more than his disability. More than reliant on his parents for care, Nick is outgoing, kind, funny, and loving, says Gregory. “It can be nerve-wracking, it can be time consuming, but also, he’s 100% worth it. This is my little buddy, and we’ve been partners in crime,” she said.

Signing Up

About five years ago, Gregory found out about the Maryland Developmental Disabilities Administration’s (DDA) self-directed individual program. Instead of paying an outside caregiver to help Nick on a daily basis, his parents provide that care. The state of Maryland reimburses them for their time and effort.

Before that, Gregory says Nick was visiting Dove Pointe every day. “Having to get up that early made his seizure activity much higher. It just was not conducive for him schedule-wise, and we were hospitalized a lot,” said Gregory.

Each hospital visit meant at least two weeks minimum in the intensive care unit, says Gregory. She says her husband, who has worked for his company for about 20 years, typically burns through his allowed time off by August each year. That’s why the Gregory’s decided to get involved with the self-directed individual program. Gregory says it’s made a world of difference.

“It has made a tremendous amount of difference in his health, his wellbeing, his mental health, physical health, everything,” said Gregory.

Changes Come

However, the problem lies in who is actually being made to use the new system, says the Self-Directed Advocacy Network of Maryland (SDAN). Now, all caregivers, including those who work and live with self-directed individuals, must use a smart phone app to essentially clock-in, and clock-out. The system is called electronic visit verification (EVV).

SDAN member Alica Wolpat says self-directed program participants were only given six weeks’ notice about the change. “You’re trying to get people that may struggle somewhat with technology and change to accommodate this pretty major shift in a six-week period,” she said.

Adjusting to the System

Wolpat says while some were able to successfully navigate and set up their accounts on the new system, many others were not. “There are probably thousands of people who are on the line of not getting paid if they can’t get in, the way it’s set up today,” she said. “It is devastating, the things that could happen to people, and they are frightened.”

Gregory, who says she has worked with computers her whole life, is among those struggling with the adjustment.

“My log in is not working. It has not worked yet. I have not been able to figure it out. There are copious amounts of videos explaining how to do things. But, they just make it even more confusing,” said Gregory. “I cannot imagine how someone who is maybe 20 or 30 years older than me with an adult child in their home, who they care for full time, trying to navigate this; someone who may not be as tech savvy.”

EVV Not Required For All

On top of tech issues, SDAN members and Gregory take issue with being lumped into the system in the first place.

“We’ve always had to record our hours, and submit our hours on a time sheet. That’s not my issue. My issue is that the regulations do not require live-in caregivers to participate in this. This is only meant for visiting [caregivers],” said Gregory. “This was done without buy-in from the stakeholders in this situation. The DDA has unilaterally decided to do this without any kind of input.”

Wolpat says requiring self-directed individuals’ caregivers to use the system simply doesn’t make sense.

“Electronic visit verification was really set up for services that require in-home visit,” said Wolpat. “If you reside with the person, you’re not visiting. So, you’re not having to document that you came, did something, and left. You’re there all the time.”

Purpose Of EVV

DDA’s decision could have come from an effort to clamp down on fraud, says SDAN. EVV was created through federal legislation intended to ensure hired help were providing the proper services and not fudging time sheets.

However, Wolpat points out that funds for self-directed individuals are vigorously assessed in a yearly check-in with the state. Plus, she says the actual number of self-directed program participants committing fraud is nearly nothing.

“Statistics and research have shown that the incident of fraud is very small. I think it’s 0.001%,” said Wolpat. “[Self-directed individuals] needs have been assessed and documented. They’re not getting any more than they need to get the support that they need to live their life.”

Self-directed program support can greatly increase the quality of life for those living with disabilities, says Wolpat. “Self direction does allow you to decide what you want to do, where you want to do it, who you want to do it with, and provides you with a pot of money to use for your assessed needs,” she said.

Calling For Change

Back in Salisbury, Gregory says she and her husband will continue trying to get help with navigating the new system. But, Gregory says she is extremely disappointed with the spot it’s left them in. “It is very much about us, without us, and it is something that I really hope the DDA reconsiders,” she said.

Meanwhile, Wolpat says SDAN has asked DDA to consider allowing self-directed program participants to use paper time sheets, as they did in the past. Wolpat says the DDA raised the possibility of considering that, but made no promises.

It’s a situation that Wolpat says she hopes the DDA will resolve sooner, than later.  “I do not believe they intend that people are not going to get paid. I think the way, the methodology of going about it, and the stress level can be laid, really, at their feet,” she said.

47 ABC WMDT did reach out to the DDA for comment, and did not hear back.