Baldwin County Families Say Alabama Medicaid Altered Forms to Deny Disabled Children’s Benefits

Several Baldwin County families say Alabama’s Medicaid program has grown stricter, and in some cases has altered medical eligibility paperwork, in ways that stripped their disabled children of a waiver that lets them be cared for at home instead of in an institution.

Amanda Haddock of Fairhope said her 6-year-old son, Lawson, has been enrolled in Alabama’s Elderly and Disabled (E&D) Medicaid waiver since 2021, following a stroke he suffered in utero that led to a rare form of epilepsy, the surgical disconnection of the left side of his brain, a permanent shunt and a feeding tube. Lawson’s eligibility was unexpectedly denied last year, despite what Haddock described as no improvement, and in some ways a worsening, of his condition.

“Nothing’s changed. Absolutely nothing has changed,” Haddock said. “If anything, we’ve added physicians and added diagnosis.”

While preparing for a June 25 fair hearing on the denial, Haddock said she discovered a “nursing home level of care” eligibility form she had not seen before. Several criteria her son’s doctor had marked were crossed out, with notes claiming permission had been given to remove them — criteria Haddock said were critical to classifying Lawson as at risk of institutionalization, a required threshold for the waiver.

The form functions as a “score card” that determines whether a child is medically classified as at risk of institutionalization. Haddock said she called Lawson’s longtime pediatrician, who denied giving any such permission. “She said, ‘Amanda, absolutely not. I did not give permission to do this,'” Haddock recalled. Haddock’s attorney received a letter from the doctor confirming that before the hearing, and the administrative law judge allowed the evidence into the record over an objection from the state’s Medicaid attorney. The family is still awaiting a decision.

Jason Fisher, also of Fairhope, said his 16-year-old daughter, Mackenzie, who has Distal 18q deletion syndrome and is nonverbal and fully dependent on caregivers, went through a similar experience. After his wife died at 30, when Mackenzie was young, Fisher said he has raised her alone for 11 years, relying on the waiver to work while ensuring she is cared for.

Fisher said he first assumed a paperwork error when Medicaid moved to terminate Mackenzie from the program, but discovered changes to his daughter’s eligibility paperwork during her hearing, when he saw the original documents for the first time, and that her doctor later stated in writing that neither he nor his office made the edits. Fisher said the judge acknowledged the significance of the changes but still recommended denial, and Medicaid issued a final decision terminating Mackenzie’s waiver. He has retained legal counsel to seek reconsideration.

Haddock and Fisher share the same Medicaid case manager and said they later compared notes and found their children’s forms had been altered in a similar way. Haddock said a Medicaid nurse testified under oath at her hearing that the handwriting on the altered form belonged to the case manager. Fisher said he reached a similar conclusion after reviewing dates and signatures on his daughter’s paperwork, noting the edits were dated before the document even existed. Fisher said he signed a blank form on April 11, and the pediatrician completed it about a month later and sent it directly to Medicaid; when it resurfaced as a hearing exhibit, the alterations appeared to attribute the edits to Fisher himself.

“I can’t make changes to a document that didn’t exist until a month later,” Fisher said.

Haddock said she later confronted the case manager during a home visit. The case manager told her she had been called into a mandatory Monday meeting “along with all of the staff from the state,” that case managers had since been barred from handling the forms, and that stricter waiver criteria were coming “from the state level,” with the state “getting very strict on the criteria to be on the waiver.”

In a joint statement, the Alabama Medicaid Agency and the Alabama Department of Senior Services, which administers the E&D waiver, denied that removals are tied to enrollment-reduction or savings goals.

“No individual has been denied waiver services due to enrollment-reduction goals, savings targets or denial benchmarks, as neither the Alabama Medicaid Agency nor the Alabama Department of Senior Services maintain such goals, targets or benchmarks,” the agencies said in a July 31 statement, adding that participants are eligible if they meet specific medical criteria and are at risk of nursing home placement, and that the agencies “strive to ensure that every applicant who meets all points of eligibility is awarded waiver services.” The statement did not directly address the families’ allegations that forms had been altered.

The agencies encouraged families who lose waiver services to pursue the administrative appeals process, including informal conferences, fair hearings and continued benefits during review, and noted individuals may reapply at any time with new documentation.

Other families report similar friction without evidence of altered documents. Michael Kay, a Auburn University employee whose 16-year-old son Samuel has Rubinstein-Taybi syndrome, said Samuel’s case manager told him this year that children under 18 could no longer qualify under a criterion of the nursing home level-of-care form that had previously applied to his son. When Kay pressed for the written policy behind that change, he said he could not find any. “I don’t see anything in here that if you’re a minor, you can’t check it anymore,” he said.

Samuel is nonverbal, uses a mobility chair and requires constant supervision. “He obviously meets a nursing home standard level of care,” Kay said. Samuel’s doctor submitted another criterion along with a supporting letter, but Samuel was denied anyway; Kay said the denial rested on the assumption that the family would keep caring for him at home regardless, so he was not truly at risk of institutionalization. To Kay, that reasoning turns the waiver on its head, since the program exists so families can keep medically fragile relatives at home rather than in institutional care that would cost the state far more. The family is preparing for an informal conference. “I feel like I have the ability to actually fight where most people don’t,” Kay said. “These families are just getting raked over the coals.”

Cecelia Ballinger, an Equal Justice Works fellow with the Alabama Disabilities Advocacy Program at Alabama Arise, said during a June 23 webinar that she is aware of nurses telling families that particular criteria, including one covering routine medication assistance, cannot be used for minors — despite no written policy supporting that limitation.

“I agree that there is currently nothing in writing saying that [criteria] A would not apply to individuals under the age of 18,” Ballinger said, encouraging families to ask the state to identify any written policy behind such denials. “Ask for a written policy that says that,” she said, “because that would be a limitation that is not in the application to CMS, as far as I’m aware.”

Ballinger also said the requirement to prove a risk of institutionalization is being “stringently enforced now,” and that children’s cases are reviewed differently because of assumptions about parental support. Criteria A, which covers patients who need help taking medications, is written broadly enough to include daily eye drops or ointments, she noted.

Mary Potter of Madison, who helps run an online support network of about 700 Alabama families using the E&D waiver and similar services, said she has seen a noticeable increase in denials over the past year, including for families who have participated for years without issue. Potter said she believes the state is right to re-examine participants who no longer meet the criteria, but that the scrutiny is landing on everyone, including her own family: her 34-year-old daughter, Amanda, who has Rett syndrome and has been nursing-home eligible since age 12, had her doctor’s notes questioned this year for the first time in roughly 14 years. The issue was resolved, but only after a scramble past a March 31 redetermination deadline that left the family waiting until April 5 for the result. “That’s nerve-wracking and unnecessary,” Potter said.

The disputes come as Alabama faces a January 2025 letter from the U.S. Department of Justice’s Civil Rights Division finding the state in violation of Title II of the Americans with Disabilities Act for inadequately supporting disabled children’s ability to live and receive care at home rather than in institutions. The letter cited restrictive approval policies that limited community-based support for children with physical disabilities and departures from treating physicians’ recommendations without explanation. “Alabama’s policies and practices place many more children who currently live in the community at serious risk of unnecessary segregation,” the DOJ letter states.

The legal ground beneath that finding is shifting, however. In June, the DOJ’s Office of Legal Counsel rejected the department’s long-standing reading of the ADA’s integration mandate, and on July 20 the department said it would no longer rely on that mandate when enforcing Title II. On June 5, Alabama Attorney General Steve Marshall joined Georgia in an amicus brief in United States v. Florida, pending before the 11th U.S. Circuit Court of Appeals, arguing for a narrower reading of the ADA’s protections for people not yet institutionalized and contending that the lower court had stretched the integration mandate beyond individualized proof of discrimination.

M. Geron Gadd, a senior attorney with the National Health Law Program and former legal director of ADAP, said that legal position “would make it much harder for families to obtain critical services for their children where they are most developmentally appropriate and cost-effective,” even though it would not erase the DOJ’s underlying findings about Alabama’s system. “At most,” she said, “it will affect what the state must do to correct that failure.”

“Erecting unnecessary barriers that parents must hurdle to get help for their sick children isn’t wise or efficient stewardship of public resources; it just makes these families’ most heartrending challenges more difficult to bear,” Gadd said.

Lawmakers Call for Closer Review

State lawmakers say the families’ complaints warrant closer review. Sen. Chris Elliott, R-Josephine, said he has spoken with Medicaid officials directly after learning that one of the affected families included Jason Fisher and his daughter, Mackenzie, whom Elliott knew from a 2018 campaign in which the two ran against each other for Alabama Senate District 32. “If you don’t think you can make friends on the trail, that’s proof you can,” Elliott said.

Elliott, who serves on the Senate Finance and Taxation General Fund Committee that reviews Alabama’s General Fund budget, including the state’s Medicaid appropriation, said his understanding is that state agencies have increased scrutiny under pressure to ensure people receiving public benefits are actually eligible, consistent with a broader push from the Trump administration to reduce waste, fraud and abuse in public assistance programs. “Our state agencies are tightening up criteria and oversight,” Elliott said. “Are they getting everyone right? No. These many stories likely show that.”

Elliott said he has been assured there is no mandate to reduce the waiver program for budgetary reasons, noting most Medicaid funding comes from pass-through federal dollars, but said the state should still review whether eligibility criteria are being applied correctly. “We may need to look at the criteria — are we doing it correctly?” he said. “Is the end result achieving our goal? Are we achieving our goal even if we are pushing our error rate down to zero?” Elliott said Medicaid has a “very well defined” appeals process and encouraged affected families to use it. “I’m sorry you’re going through this. You’ve got enough on your plate,” he said. “There are chances to have someone else review your case through the appeals process. You absolutely should avail yourself of those pathways.”

Rep. Frances Holk-Jones, R-Foley, a member of the House Health Committee, said she has spoken with parents, family members and concerned citizens about the denials. “It is our duty to protect all Alabamians, and our most medically fragile children deserve consistent and capable care,” she said. “I am certainly willing to assist in working through these concerns with them to find a solution.”

Rep. Mark Shirey, R-Mobile, vice chair of the House Health Committee and an optometrist by trade, said he was not previously aware of the reported denials. “Any report that eligible individuals may be losing Medicaid coverage deserves to be taken seriously,” he said, adding that he has seen reports that physician forms may have been altered without doctors’ knowledge. “If that occurred, it is unacceptable and should never happen.” Shirey said the committee’s role is to determine whether the complaints are isolated incidents or part of a broader problem and to ensure the redetermination process is administered fairly and according to law.

Jennifer Harris, senior health policy advocate for Alabama Arise and a voting member of the Medicaid Advisory Committee, said her organization is aware of families losing benefits. “We have heard from families that have children with complex medical needs unexpectedly losing services and receiving denial letters with little to no explanation,” she said. Harris said written guidance from Medicaid would improve transparency and help families understand the appeals process. “Medicaid was designed to protect medically vulnerable individuals, especially children,” she said. “It is a travesty when proposed changes to eligibility requirements are not shared before implementing. Caregivers should have adequate time to address concerns with Alabama Medicaid before coverage is terminated.”

Most members of the Medicaid Advisory Committee, which serves in an advisory role to the Alabama Medicaid Agency, either did not respond to questions or declined to comment, including representatives of the Alabama Pharmacy Association, the Alabama Department of Mental Health and the Alabama Department of Public Health, whose state health officer said the committee is not involved in individual eligibility decisions or appeals.

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