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.
Haddock said she called Lawson’s longtime pediatrician, who denied giving any such permission. 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 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 discovered changes to his daughter’s eligibility paperwork during her hearing 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.
“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, who told her that case managers had since been barred from handling the forms after a mandatory statewide staff meeting, and that stricter waiver criteria were coming “from the state level.”
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 they “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 and fair hearings, 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.
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.
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.
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 the Americans with Disabilities Act for inadequately supporting disabled children’s ability to live and receive care at home rather than in institutions. Alabama Attorney General Steve Marshall has since joined Georgia in an amicus brief before the 11th U.S. Circuit Court of Appeals arguing for a narrower reading of the ADA’s protections for people not yet institutionalized.
M. Geron Gadd, a senior attorney with the National Health Law Program, said that legal position could make it harder for families to challenge benefit denials, even though it would not erase the DOJ’s underlying findings about Alabama’s system.
“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.