How Alabama Fails Sick Kids and People With Disabilities
Alabamians describe mismanagement, confusion, and retaliation as they try to navigate a state program for elderly and disabled residents.
By Ash Peterson and Nicole Bardasz, More Perfect Union
In 2003, an Alabama resident named Claire suffered an accident that left her permanently disabled. Since then, she has needed help with most aspects of daily life, including dressing, showering, and administering her medical treatments.
Claire’s elderly mother took on much of her care early on. Though the family fought to get help, they often struggled to find caretakers who would work for the meager pay allotted by the state.
One day, her mother left the house to pick up Claire’s prescriptions and left Claire, whose name has been changed to protect her privacy, in the care of a worker that the family paid for through Alabama Medicaid’s Elderly & Disabled program. When Claire’s mother returned home, she discovered that her daughter—who took medications that made her especially sensitive to sunlight—had been left alone outside in the sun while the home worker went to get lunch.
“She was already sunburned all around her braces, her neck. Her face was so flush,” her mother recounted. This wasn’t the family’s first or last problem with the state program—and they aren’t the only ones.
The families of Alabama’s most vulnerable residents say they’re being ignored, misinformed, and retaliated against by the state’s Medicaid system, and earlier this year a group of them filed a class action lawsuit alleging the state violated the rights of more than 12,000 people. Experts say that Alabama is just one particularly striking example of the arbitrary and opaque nature of how these programs are administered, a problem exacerbated by chronic underfunding.
‘I’ve been waiting two years’
Thousands of Alabama residents live with chronic conditions or disabilities that require care normally found in a nursing home, such as help with bathing and changing out feeding pumps. These residents—including elderly Alabamans, disabled children, and disabled adults—are eligible for the state’s Elderly & Disabled Waiver, which exists to keep recipients in their community and out of a nursing home.
Neighboring Georgia also has a Medicaid Home and Community Based Services program for disabled individuals, but the majority of applicants have spent several years languishing on a waiting list that consists of more than 7,000 people. Illinois residents, meanwhile, are told to expect a 5-7 year wait before receiving Medicaid Waiver services.
Dom Kelly, president and CEO of the advocacy organization New Disabled South, said waiver programs for Medicaid Home and Community Based Services across the region are plagued with mismanagement and retaliation.
“In Alabama and across the South, we are seeing disabled people of all ages forced out of communities and into nursing homes,” Kelly told More Perfect Union. “Thousands remain on state waiting lists to receive Medicaid waivers to be able to get care in their homes, and parents with disabled children are often separated from their kids or forced to live in poverty because they themselves have to stay home and provide critical care.”
Those in the home and community-based workforce nationally are overwhelmingly women and nonwhite, and most states pay personal care providers less than $20 an hour for their life-sustaining labor. Waiver recipients said the low pay is reflected in the care they receive.
More Perfect Union spoke to more than half a dozen people, including former state employees and current waiver recipients, about the shortcomings of the Alabama program. Many families, who requested anonymity out of fear of retaliation, described a process that has been chaotic and confusing every step of the way.
“I've been waiting for two years to get services from the state of Alabama,” one parent, whose son is autistic and nonverbal and suffers from severe seizures, told More Perfect Union. The parent spent months trading missed calls and emails with Medicaid while initial assessment meetings were scheduled, canceled, and rescheduled.
Most people waited weeks or months to hear back about their initial E&D Waiver application, if they were even able to submit it in the first place. In the meantime, parents and other family members attempt to care for their sick loved ones while juggling finances, frequent hospital visits, and mountains of paperwork.
“One of the children who passed away during the preparation of our complaint, she passed away because she was being suctioned by an untrained nurse,” said Shandra Monterastelli, a senior staff attorney at the nonprofit Alabama Disabilities Advocacy Program.
‘Some of them died before they ever got a callback’
Monterastelli has worked on these issues for more than five years and said that when she started, state employees turned prospective beneficiaries away from even applying.
These waivers provide disabled Alabamans with health care services that weren’t originally in Medicaid law. The E&D Waiver specifically offers services like in-home caregiving, which isn’t typically available to those on Medicaid. The government has “waived” some of the usual rules so people who need nursing home-level care can stay in their homes instead.
Without the waiver, disabled residents would have to choose between living in a nursing home, enlisting family members or friends to take care of them, or paying out of pocket for care—a tall order, considering that 20 percent of disabled Americans live below the poverty line.
But several families, including those represented in ADAP’s lawsuit, said agency employees and case managers have repeatedly provided false or misleading information about what services they are entitled to.
Case managers reportedly told some parents they couldn't work while also receiving services, while others were told that they could only choose one waiver service. Neither of these claims is supported by documentation, and many waiver recipients’ caregivers have maintained jobs while receiving multiple services.
Some families said they had to fight to apply for the waiver in the first place. One plaintiff allegedly tried to apply on behalf of their disabled child last January; after three months with no response, the parent contacted officials who said they would have to restart the process because the application had never been “entered in” to the Alabama Department of Senior Services. It would take six months total for the parent just to receive an official application form.
Kathy Fountain, who served as the Director of Long Term Care Reform for Alabama Medicaid for one and a half years, told More Perfect Union that some applicants waited years to get services. "And some of them died before they ever got a callback,” she recounted.
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Alabama Medicaid and ADSS use an hour-based system to administer some of the E&D Waiver services. The homemaker and personal care services, for example, are awarded as a certain amount of hours per week. Recipients can then choose whether to allow an agency to manage their care and send a caregiver to their home for those hours, or families can choose to hire someone themselves, with an allotted budget from the state to pay for the service.
While services associated with the E&D Waiver “cannot be provided 24/7,” according to government documents, there is also no set cap on the number of hours recipients can be awarded.
Several families said they had to educate their own case managers about the services waiver recipients are entitled to because the employees themselves weren’t aware. Fountain says these issues are in part because case managers are overworked, underpaid, and undertrained. “[State agencies] complicated it by going after this national certification that requires the case managers to do more work...but they're not paying them more money,” she told MPU.
Agency representatives seem to communicate sporadically with waiver recipients as well. Some families report being “ghosted” after making requests for more hours or services, while others are verbally told that their requests have been denied, rather than receiving the rejection in writing. E&D recipients are legally entitled to challenge these decisions, but the lawsuit asserts that many families are not fully informed of their right to appeal.
When one parent asked how ADSS handles service requests, one director admitted that the agency has no definite rubric for their decisions, according to the suit. “[I]nstead, requests are granted or denied based on the observation of whoever comes to the recipient’s home,” the lawsuit reads.
As a result, the agency’s decisions appear to be applied inconsistently. For example, one plaintiff repeatedly asked that their monthly visits be carried out over the phone because they are immunocompromised and often sick with respiratory illnesses (the CDC reported a surge in Alabama’s COVID-19 activity at the beginning of this year). ADSS allegedly denied these requests and instead forced the plaintiff to have in-person visits. A different plaintiff, meanwhile, exclusively had virtual visits, even though their family members frequently requested in-person meetings.
Families told MPU that when they continued to push for services or complain about the waiver’s inadequacies, their case managers warned that they should stop or else risk being “audited” by the state and losing the hours they had. Fountain said that retaliation and threats were common practice, “because when a case manager gets mad at a client, they'll put the services on hold.”
After one plaintiff asked for more hours for their child, their case manager allegedly responded by reporting that parent to the state agency that administers child protective services. (No evidence of abuse or neglect was found.)
One year later, this same parent was told that their child would be put in a nursing home if they wanted more hours, according to the lawsuit. Multiple caregivers report that their case managers suggested putting their loved ones in an institution, even though the purpose of the E&D waiver is to keep elderly and disabled residents in their homes or communities.
These roadblocks to care have taken a toll on families’ mental and physical health. Monterastelli said caregivers put off cancer screenings and important procedures because they don’t have anyone else to care for their loved ones.
Adult waiver recipients told More Perfect Union that they are concerned about what will happen to them once their parents are no longer able to care for them. ADSS, meanwhile, has encouraged clients to ask family friends for help or to advertise for caregivers on Facebook.
“But that's generally what people like me have to do,” Claire said. “You take out an ad on Facebook to see if someone can help you shower.”
‘They’re just trying to keep their kids alive’
While many families have complained to the state about these issues, Fountain said staff members would simply choose not to document complaints. “If it wasn't documented in the complaint log, it never happened,” she said.
The recent lawsuit urges the court to recognize that Alabama Medicaid and ADSS have violated waiver recipients’ rights to due process and to ensure that these “unlawful acts” stop. The suit says that the waiver mismanagement is a systemic failure of ADSS and Alabama Medicaid, rather than the fault of a few case management agencies.
Fountain agreed. She said the state needs to hire people who are actually qualified in social work, or conduct longer and more in-depth training sessions. Some parents told MPU they want case managers to be paid more and trained better so they can care for their clients.
“Regardless of the reason, our Medicaid HCBS waiver systems are completely broken in every part of this country - from the federal government down to each state level,” New Disabled South’s Kelly said.
Monterastelli pointed to Alabama’s mental health waivers (which specifically provide services to residents with intellectual and developmental disabilities) as an imperfect but ultimately better model for assessing service needs than the state’s Elderly & Disabled waiver.
“They do have a much stronger standardization so that people are all governed by the same procedures, they’re governed by the same rules,” Monterastelli said. “They provide appropriate notice of rights and due process when people’s services are reduced or when their requests are denied.”
Some families have responded to the “ghosting” and threats of retaliation by trying not to “rock the boat,” according to Claire and her mother. Meanwhile, others have organized to hold the state accountable. In 2022, a group of families alleged the state had been stiffing them on payments; Alabama had to pay $7,000 to one parent after she discovered she’d been underpaid for years.
The latest ADAP lawsuit is another challenge to the status quo, where parents like Kelly Morris are determined to reform the system through legal challenges and building a community of caregivers and waiver recipients.
“I feel like I’m at a point where I can fight for those who can’t, because caregiving is so exhausting,” Morris told MPU. “A lot of marriages fail, so moms are stuck doing this by themselves.
“And they’re just trying to keep their kids alive,” she added, “nevermind fight with [state employees] over the pittance of hours that the state wants to award them.”
If you or a loved one have a story about your experience with a Medicaid waiver for disabled residents, send us an email: stories@perfectunion.us.