Medicaid enrollees sue Florida for mismanagement of the Long Term Care Waiver Program, citing barriers to essential services
Tallahassee, FL (September 23,2024) – Pro bono attorney Nancy Wright and two legal aid organizations filed a lawsuit today in federal court against Florida’s Agency for Health Care Administration (AHCA), claiming that that the state’s management of its Medicaid Long Term Care (LTC) Waiver program violates the U.S. Constitution, the Medicaid Act, the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act of 1973.
AHCA operates the LTC Waiver through managed care plans to provide home and community-based services to people with disabilities, age 18 and up, or frail elderly, age 65 and up, who meet a nursing home level of care. Under the program, enrollees can receive help with their daily personal needs, including hands-on care, supervision and social enrichment, and homemaker services to allow them to live safely in the community.
Together with Wright, Southern Legal Counsel, a Gainesville, Florida-based, statewide nonprofit law firm, and Legal Services of Greater Miami (Legal Services) filed the suit on behalf of five plaintiffs enrolled in the LTC Waiver. According to the complaint, all the plaintiffs and their caregivers have experienced the frustrations of having to fight puzzling reductions or denials of critical services that ignore actual needs using criteria not found in any rule. They are also reported to have encountered misleading or vague notices, inaccurate assessments, and a variety of tactics to prevent them from being informed. The complaint argues that these issues are systemic and that AHCA’s approval of or failure to correct these problems results in a denial of due process required by federal law and the 14th Amendment and places the plaintiffs at constant risk of segregation in institutions like nursing homes in violation of the ADA and Section 504.
“The administration of the LTC Waiver, with the use of managed care plans as gatekeepers for authorization of services, is plagued with lack of information, misinformation, and slight of hand. In this climate, enrollees with disabilities and their overburdened caregivers do not have the knowledge or power to fight for the services they need to stay at home, nor should they have to fight,” says Nancy Wright. “AHCA has rules in place that would protect enrollees, but they are routinely ignored, even by AHCA’s own Office of Fair Hearings. The result is a program that talks the talk but doesn’t walk the walk.”
The plaintiffs range in age from 22 to 84 and live with conditions from quadriplegia to Alzheimer’s disease. All the plaintiffs live at home with the support of family members. Managed care plans have unilaterally decided without evidence that family members (unpaid caregivers called “natural support”) should be shouldering more of the caregiving load. For example, Plaintiff Grant, who has a rare genetic disorder and complex medical conditions, had his personal care services reduced from 84 hours to 48 hours per week, even though his needs had increased. Mr. Grant’s mother, his primary caregiver, was told that other household members should provide the extra care. At the time, the “household members” besides Mr. Grant were his mother, her three minor grandchildren with special needs, her husband with a heart condition, and her elderly and frail parents. Providing this information to the managed care plan did not influence its decision. It was not until Mr. Grant obtained counsel that it was discovered that the assessments required by state rules were inaccurate.
Plaintiff Gonzalez’s situation is an example of the way critical information is disregarded or never even accessed. When her family asked for more services to make up for the loss of care and supervision after the death of her husband, they were repeatedly told that this was not a “significant change.” Her request was met with an initial notice reducing her services. Despite the advocacy of her family, Ms. Gonzalez was unable to replace the care she lost after her husband passed until she was assisted by Legal Services, many months after the request was made. “When we became involved, we learned that both state-required assessments for Ms. Gonzalez had never been seen by the family and were incorrect, and that her legal representative was being asked to sign a tablet to attest to a care plan she could not read,” said Jocelyn Armand of Legal Services of Greater Miami. “In other words, decisions on Ms. Gonzalez’s care needs were being made without regard to the information known by Mr. Gonzalez’s family.”
All the Plaintiffs have struggled to determine why services are being denied or reduced. While some received written statements that are completely generic, others were told that the decision was made because they did not have a specific problem. For example, Plaintiff Gray, who has quadriplegia, was advised that one of the reasons for denying personal care services was that he was not a wanderer, a fact wholly unrelated to his own need for services. Plaintiff Petro, who has intractable seizures, was told nursing was being terminated in part because he was not on a ventilator or in need of wound care.
“Long Term Care Waiver enrollees are misled into thinking they cannot have the services they need because they do not have a certain condition, or because managed care plans just do not approve more than a certain number of hours,” says Chelsea Dunn of Southern Legal Counsel. “AHCA has the ultimate responsibility for managing Florida Medicaid, and yet it allows plans to refuse to provide services necessary to keep people safe at home. And because the system lacks adequate due process, these problems go uncorrected. AHCA must fix the program so that its operation does not needlessly force people with disabilities into institutional care.”
The complaint asserts that that the state violates the due process clause of the US Constitution, the Medicaid Act, the ADA and Section 504. Due Process and the Medicaid Act require that Medicaid enrollees are provided with a meaningful appeal process when a claim for services is denied or delayed, including adequate notice of the adverse decision and the opportunity for a fair hearing. The ADA and Section 504 prohibit unnecessary segregation of people with disabilities into institutions and requires that public entities and recipients of federal funds administer services, programs and activities in “the most integrated setting appropriate to the needs of qualified individuals with disabilities.”
The case is Grant et al. v. Weida, Case. No. 4:24-cv-00384-RH-MAF (N. D. Fla.).
A copy of the complaint is available here.