Daniel Gray has been in the Medicaid long term care program since 2017
Five Medicaid beneficiaries and their caregivers allege in a federal lawsuit that the DeSantis administration is allowing medical contractors to deny, reduce, or terminate care for Floridians with disabilities while ignoring legally mandated safeguards.
Filed in Tallahassee federal court by pro bono attorney Nancy Wright, Southern Legal Counsel, and Legal Services of Greater Miami, the complaint accuses the Agency for Health Care Administration (AHCA) of mismanaging a Medicaid program that provides home and community-based services to people 18 and older and living with a disability, and 65 and older who qualify for nursing home care, with the goal of preventing them from being institutionalized.
The 78-page complaint asks the court to block the state from allowing state-sponsored Medicaid managed care plans from placing what the plaintiffs say are arbitrary limits on services and from creating administrative barriers that the lawyers contend boggle beneficiaries and their caregivers.
The plaintiffs and their caregivers allege the state is violating their due process and equal rights protections as well as the American with Disabilities Act. The lawsuit seeks attorney fees and litigation costs.
“AHCA’s failures in the administration of the LTC [long-term care] Waiver are working directly against the very purpose of the program: to provide adults with disabilities with the care that they need to stay in the community and avoid institutionalization,” attorneys for the plaintiffs wrote.
“Until these failures are corrected, plaintiffs will continue to suffer arbitrary reductions, terminations, and denials of services and the lack of meaningful due process to assert their need for services.”
AHCA did not respond to Florida Phoenix’s request for comment.
Unnecessary harm
The plaintiffs range in age from 22 to 84 and contend the managed care plans erroneously reduced or denied services to which they were entitled. They had to wrangle with the health plans and AHCA and hire attorneys to solve the disputes.
The complaint says that “notices of adverse benefits determinations (NABD)” were not timely sent and moreover that the mandated notices often didn’t explain why the benefits were being reduced or denied. Instead, the notices would either list facts about the beneficiaries or cite internal or state Medicaid policies without providing any additional context.
Beneficiaries weren’t provided copies of their medical records, the complaint alleges. When copies of mandatory evaluation forms were provided, they contained mistakes, it continues. The forms are central to a beneficiaries’ care plans, but beneficiaries and caretakers couldn’t catch mistakes because they weren’t shown the full documents before being asked to sign in approval.
Consequently, beneficiaries and caregivers spent hours trying respond to notices of adverse benefit determinations without the information they need to respond to the managed care plans’ decisions.
“Plaintiffs have been subjected to decisions on critical home health services that ignore their actual care needs using either arbitrary limitations or inadequate assessments, or both,” the lawsuit states. “Plaintiffs have been subjected to repeated due process violations that leave them with insufficient information to determine whether or how to meaningfully challenge plan decisions on needed services.”
Working against itself
Florida established its Medicaid long-term care program with the goal of keeping people from being institutionalized by providing them services allowing them remain living in their communities.
The state operates the program through a Medicaid waiver. As of Aug. 31, 142,768 people were in the long-term care program.
Chelsea Dunn of Southern Legal Counsel said the plans’ decisions and AHCA’s hands-off regulatory style are at odds with the goals of the Medicaid waiver program.
“The program is set up for the very purpose of keeping them at home; but it’s not being administered in a way that can actually do that or is it doing it properly,” Dunn said.
In addition to missteps at the plan level, the complaint alleges that AHCA fails to ensure that beneficiaries’ services continued during the internal appeal with the plan and the state’s fair hearing process.
“AHCA knows or should know that Plans are terminating enrollee services without proper notice and the opportunity to request services to continue pending appeal,” the suit contends.
Meet the plaintiffs
The complaint tracks the experiences of five beneficiaries, all of whom saw care pared back or denied. Two of the beneficiaries are enrolled in Sunshine Health, one in Simply Health, one in Molina Healthcare, and one in Humana — all managed care plans under contract with AHCA.
Humana told Florida Phoenix in an email that it will not comment on the pending litigation. None of the other Medicaid managed care plans named in the complaint responded to requests for comment.
The plaintiffs
Marc Grant is a 25-year-old man from Lake County who was born with rare progressive genetic disorders causing developmental disabilities and chronic life-threatening medical conditions that have damaged his muscles, nerves, joints, and connective tissue.
He is a heart transplant recipient and severely immunocompromised. He cannot speak and has a severe sleep disorder. Grant requires physical assistance for all his care needs. He lives with his mother, father, grandfather (who is in hospice care), two nephews, and a niece, all of whom have developmental disabilities.
Grant was receiving 84 hours per week of personal care services. Sunshine Health tried to pare back that amount to 48 hours per week, claiming family could fill in the gaps.
Rafaela Gonzalez is an 84-year-old woman who lives alone in Miami-Dade County. She has Alzheimer’s disease, chronic heart and kidney disorders, and progressive muscle weakness, which has left her in a wheelchair and dependent on others to move around. Her family requested an additional 38 hours a week of personal care services after her husband died, but Molina Healthcare initially denied the request.
Another plaintiff, identified by the initials CJT, is 65 and lives in Broward County in an apartment with his 72-year-old sister. He has a history of schizophrenia, schizoaffective disorder, severe anxiety disorder, and neurocognitive disorder. He requires assistance with all his care needs. Sunshine Health moved to eliminate his adult companion care because he lives with his sister and is not “socially isolated.”
Daniel Gray, 38, lives in Pinellas County with his parents. He is quadriplegic and requires around-the-clock care and supervision plus assistance bathing, grooming, and eating. He requires additional support to manage or prevent spasms, bed sores, and other conditions. Gray lives with his 73-year-old mother and 85-year-old father, who has been diagnosed with lung cancer. Gray requested an additional 42 hours a week of care, but Humana denied the request.
22-year-old Branden Petro and his family. Branden is on the Medicaid Long Term Care Waiver program that provides community based services to those who qualify.
Branden Petro is a 22-year-old man with autism and Alpers disease, a rare genetic disorder that leads to dementia, liver failure, and seizures. Simply Healthcare attempted to terminate all of Petro’s attendant nursing care services citing Florida Medicaid policy but providing no additional details.
At risk of institutionalization
“Plaintiffs have been harmed by AHCA’s failure to oversee plan practices in the administration of the program. Whether by AHCA’s lack of oversight or, in certain instances, approval of Plan practices that ignore the actual care needs of Plaintiffs, Plans are allowed to make arbitrary decisions to deny or reduce critical services needed to safely maintain Plaintiffs in their homes. As long as AHCA continues to allow Plans to make service authorization decisions using criteria unrelated to their needs and unsupported by authority, Plaintiffs are at risk of institutionalization,” the suit reads.
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