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Families of Disabled Children Struggle as Alabama Misses Regular Payments

For about a month, many families say they did not receive any money from the Alabama Department of Senior Services, the state agency that administers the Elderly and Disabled Waiver. (FILE)
By Savannah Tryens-Fernandes | stryens-fernandes@al.com

Gabrielle Mays-Gordon had to put off buying groceries for her family because paying the power bill was more urgent.

Not only does her 8-year-old son need an oxygen machine to breathe, but if the heat dips below 75 degrees in her home, his muscles begin to spasm and “he’s in so much pain that it takes forever to get under control,” she said.

Mays-Gordon is one of about 7,000 Alabamians who rely on payments from the state to care for an elderly or disabled family member.

But for about a month, many families say they did not receive any money from the Alabama Department of Senior Services, the state agency that administers the program. The department last month changed to a new financial management company responsible for distributing payments.

“We need to get paid so we can maintain our way of life so we don’t have to figure out how we’re gonna eat for the next week,” Mays-Gordon told AL.com. Along with putting off buying groceries for the week, she also had to set up a payment plan with her phone company because she did not have enough money to pay her bill due on Friday.

AL.com spoke with a dozen families throughout the state who said they did not receive pay from Acumen, the new financial management company, on Friday as scheduled. Families also say they did not receive pay last month from Allied, the company responsible for making payments prior to the transition on Dec. 22.

The money comes from the Elderly and Disabled Waiver, a program that helps people who are elderly or disabled receive long-term care at home or in their communities. Through the personal choices program available to people enrolled on the waiver, caregivers receive bi-weekly payments to help pay bills, buy food, and purchase medical equipment, as well as to pay for nurses and health care providers to assist with treatments or give caregivers respite.

Caregiving is often a full-time job when a family member has complex medical needs, and for some families, money from this program is their only source of income.

Denise Champion, a single mother from Hoover cares for two sons who are disabled, Miles and Caleb. She said that because of the missed payment from Acumen, she overdrew her bank account over the weekend in order to buy groceries for her kids.

“Now I have to deal with overdraft fees that will recur every three days,” Champion told AL.com. “Because I don’t know when I’m gonna get paid, I’ve had people calling for bills due today and I know I’m not gonna be able to pay them.”

“Raising two small kids with full-time disabilities, that’s all I have to keep them alive and thriving…wondering how I’m gonna pay my bills and how I’m gonna feed them adds a lot of stress to an already high stress environment,” she added.

Acumen did not respond to multiple requests for comment.

In a statement to AL.com on Saturday, Allied, the old financial management company, said that “we understand the importance of timely compensation and have been working with the Alabama Department of Senior Services to coordinate the transition of payment responsibility to a new fiscal intermediary…we have continued to work into 2024 beyond our contract period and plan to make another payment next week.”

The state Department of Senior Services said in a statement Friday that “Acumen’s team will be working all weekend to process timesheets with a goal of processing payments as quickly as possible. The entire Acumen Customer Service Team is working diligently to answer questions on the company’s help line as soon as possible.”

However, families told AL.com that they had been on hold with Acumen for up to eight hours to ask about the status of the payment and most never were able to get through to the company. Acumen also did not send out any emails to families notifying them of the issue.

As of Tuesday, Gordon-Mays said she had received payment from Acumen. Champion said she also received payment from Acumen over the weekend but four other families AL.com spoke with said they still had not. Only one of the families AL.com spoke with said they received payment from Allied that was scheduled for December.

“This is a government agency I should be able to rely on, but they’ve shown me that I can’t,” Champion said.

Acumen received a $200 million contract from the state that runs from Jan.1- Dec.31, 2025. The Department of Senior Services put out a request for a new financial management vendor in July and received six bids, according to the agency. Acumen’s bid was the lowest and was awarded “after a thorough review and demonstrations from each vendor,” Debra Davis, Deputy Commissioner at the Department of Senior Services said in an email Friday.

Families said the department didn’t notify them of the transition from Allied to Acumen until November. Even then, many families told AL.com that the transition was handled poorly. Champion said she did not receive any information about how to set up direct deposits or submit timesheets to the company until after they were due.

She said she instead had to rely on other families who were enrolled in the waiver for information. One family sent her a paper copy of the timecard she needed so she could submit it.

“We have a group chat of families and it was all I had to rely on to get this information,” she said.

But for many families, the late or missing paychecks were just one part of the problem.

When Mays-Gordon logged into her online portal to see the status of her timesheet on Thursday night, she saw that her and her son’s information, including their address, contact information and the last four digits of their social security number could be viewed by anyone with a login to Acumen’s site.

“It’s too much information about a little 8-year-old to be on there,” Mays-Gordon said. “This is like a major violation of privacy.”

AL.com reviewed videos from multiple families showing that they could view personal information, including partial social security numbers, for 2,459 people in Alabama.

Davis, the deputy commissioner for the Department of Senior Services, said the agency contacted Acumen with concerns as soon as the data breach was reported.

“ADSS has been in communication with Acumen to make it aware of these concerns. ADSS has contacted officials with the Alabama Medicaid Agency and the Alabama Attorney General’s office to notify them of the concern,” Davis added.

Gordon-Mays and others AL.com spoke with whose information was made public said they were never notified by Acumen about the data leak. By Saturday, Gordon-Mays’ information was taken down from the online portal. However, as of Tuesday morning, information was still public for 59 people, according to additional videos sent to AL.com.

The Department of Senior Services’ administration of the waiver program is currently under investigation by the federal Department of Health and Human Services, according to the Alabama Disabilities Advocacy Program, an organization that filed a federal complaint seeking a complete overhaul of the state agency in November of 2022.

In their complaint, ADAP alleged that the department places “extreme barriers” on disabled children and adults who are trying to access Medicaid services.

ADAP said the Department of Senior Services has failed to properly administer the waivers over the last three years due to “the failure at the highest level of ADSS to develop and maintain standard procedures for how to administer their waiver programs,” leading to fatal consequences. While the organization was preparing their complaint, two potential clients died awaiting services, ADAP said.

In response to the data breach and non-payments, ADAP on Friday told AL.com that they are “deeply concerned” about the impact they will have on families and caregivers.

“We hope the agencies will take all necessary steps to resolve these problems as quickly as possible,” Shandra Monterastelli, a senior staff attorney at ADAP who is representing over a dozen families on the waiver program in their complaint against ADSS, said in an email.