Fairhope mother Amanda Haddock was already on her way to a Medicaid fair hearing to fight the denial of benefits for her 6-year-old son Lawson when she noticed something in the state’s own exhibits that stopped her cold: an eligibility form she had never seen, with several criteria Lawson’s doctor had marked crossed out — each strike accompanied by a signed note saying permission had been obtained to remove them.
Lawson has been enrolled in Alabama’s elderly and disabled (E&D) waiver since 2021, after a stroke in utero left him with a rare form of epilepsy, the removal and disconnection of the left side of his brain, a permanent shunt and a feeding tube. The waiver pays for the care that lets the Haddocks keep him at their Fairhope home instead of an institution. Nothing about his condition had improved, Haddock said, that would explain a denial. “Nothing’s changed. Absolutely nothing has changed,” she said. “If anything, we’ve added physicians and added diagnosis.”
So she called Lawson’s longtime pediatrician about the crossed-out entries on the nursing home level of care form — the “score card” that determines whether a child is medically classified as at risk of institutionalization, the key to waiver eligibility. “She said, ‘Amanda, absolutely not. I did not give permission to do this,'” Haddock recalled. By the time the June 25 hearing began, the doctor had sent a letter stating permission had never been given. The administrative law judge allowed the evidence in over the objection of the state’s Medicaid attorney. The family is still awaiting a decision.
The same pattern in another Fairhope file
Jason Fisher’s daughter Mackenzie, 16, has Distal 18q deletion syndrome, which has left her nonverbal and wholly dependent on caregivers. Fisher, also of Fairhope, has raised her alone since his wife died at 30, and the waiver is what allows him to work while she is cared for. When Medicaid moved to terminate her from the program, he first assumed a paperwork error — until the hearing, when he saw the original eligibility documents for the first time and spotted changes to her doctor’s paperwork. The doctor later stated in writing that neither he nor his office made those changes.
The timeline raised an even harder question. Fisher had signed a blank form April 11; the pediatrician completed it about a month later and sent it directly to Medicaid. When the form came back 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. The administrative law judge acknowledged the significance of the changes, Fisher said, but still recommended denial. Medicaid issued the final termination. He has since retained legal counsel and hopes to prompt a reconsideration.
The two families share a case manager. When Haddock and Fisher compared notes, they realized both denials had been altered in a similar fashion. And at the June hearing, Haddock said, a Medicaid nurse testified under oath that the handwriting on Lawson’s altered form belonged to that case manager.
After the hearing, Haddock confronted the case manager during a home visit. Haddock said the case manager described being called into a mandatory Monday meeting “along with all of the staff from the state” — and that, afterward, case managers were no longer allowed to touch these forms. Haddock said the case manager also told her the state is “getting very strict on the criteria to be on the waiver.”
The state’s answer
In a joint statement, the Alabama Medicaid Agency and the Alabama Department of Senior Services denied that any removals are tied to enrollment targets or savings goals. Participants are eligible, the agencies said, if they meet specific medical criteria and are at risk of nursing home placement, and the agencies “strive to ensure that every applicant who meets all points of eligibility is awarded waiver services.”
“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 statement said. It did not address the families’ allegations that eligibility forms had been altered, or that criteria were being read differently this year. The agencies pointed families to the administrative appeal process — informal conferences, fair hearings, continued benefits during review — and noted that anyone may reapply at any time with new documentation.
A statewide pattern, families say
Madison resident Mary Potter helps run an online support page for Alabama waiver families with about 700 members, and she says activity has noticeably increased over the past year — families losing eligibility after years on the program, convinced they still qualify. Potter believes the state is right to re-examine applicants who no longer meet criteria, but says the scrutiny is landing on everyone, including her own family. Her 34-year-old daughter Amanda has Rett syndrome and has been nursing-home eligible since age 12; this year, for the first time in roughly 14 years, the agency questioned her doctor’s notes. The issue was resolved, but only after a frantic scramble past a March 31 redetermination deadline that left the family waiting until April 5 to learn the result. “That’s nerve-wracking and unnecessary,” Potter said.
Michael Kay of Auburn tells a different version of the same story. His 16-year-old son Samuel, born with Rubinstein-Taybi syndrome, is nonverbal, uses a mobility chair and requires constant supervision — “He obviously meets a nursing home standard level of care,” Kay said. Samuel qualified for years through the standard form. This year, Kay said, the case manager told him the state was no longer allowing children under 18 to qualify under the section of the form used in Samuel’s case. Kay asked for the written guidance behind the new reading and found nothing. “I don’t see anything in here that if you’re a minor, you can’t check it anymore,” he said. Samuel’s doctor submitted another criterion plus a supporting letter. Samuel was denied anyway — and the denial, Kay said, rested on the assumption that his family would keep caring for Samuel at home regardless, so he wasn’t truly at risk of institutionalization. To Kay, that logic turns the waiver on its head: the program exists so families can keep medically fragile relatives home instead of turning to institutional care that would cost the state far more.
Advocates confirm a stricter reading
Cecelia Ballinger, an Equal Justice Works fellow with the Alabama Disabilities Advocacy Program working with Alabama Arise, told attendees of a June 23 webinar that the requirement to prove institutionalization risk is being “stringently enforced now” — and that children’s cases are reviewed differently because of assumptions about parental support. She also flagged the form itself: criteria A, which covers patients who need help taking medications, is written broadly enough to cover daily eye drops or ointments, yet “some nurses are saying criteria A can’t be used for minor children under the age of 18.” Her advice to families: demand the written policy. “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.”
The larger legal fight
The disputes land amid a shifting federal landscape. In January 2025, the U.S. Department of Justice found Alabama in violation of Title II of the Americans with Disabilities Act, citing 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. But the legal ground beneath that finding is moving: 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.
Alabama is also weighing in directly. On June 5, 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 that the panel below 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 the states’ position “would make it much harder for families to obtain critical services for their children where they are most developmentally appropriate and cost-effective” — though it would not erase the DOJ’s factual findings about Alabama. “At most,” she said, “it will affect what the state must do to correct that failure.”
For the families in the middle — the Haddocks awaiting an administrative decision, the Fishers weighing legal action, the Kays preparing for an informal conference — the stakes are not abstractions. The waiver is what stands between a medically fragile child and institutional care. “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.”