High school sweethearts Duane and Nancy had no idea how much their lives would change after Duane went to the ER with heart attack symptoms several years ago. Only in his mid-fifties, Duane’s severely underactive thyroid caused heart arrhythmia, blood clots, and eventually a stroke. While it initially appeared that Duane would fully recover, he continued to suffer from brain fog and felt that something just wasn’t right. A year later, Duane was diagnosed with early-onset dementia. Now, at age 60, Duane has late-stage dementia and is non-verbal, incontinent, and losing an average of ten pounds each month. His condition continues to decline, and he now experiences seizures that require hospitalization. As such, he needs assistance 24/7 with every single aspect of his daily life, and his wife Nancy has had to sacrifice her well-being to meet his needs since Florida’s Medicaid Long-Term Care (LTC) program has failed to provide them with the services he requires.

After receiving his diagnosis, Duane and Nancy tried to do everything they could to put their affairs in order. They sold their home and moved into an RV on Nancy’s sister’s property to save money for Duane’s care, with Nancy being his full-time caregiver. “We hoped for the best but prepared for the worst,” says Nancy. Their efforts also included applying for the LTC Waiver so Duane could stay home for as long as possible instead of going into a nursing home facility. The LTC Waiver program allows enrollees to receive home and community-based services (HCBS) from a Medicaid managed care plan, which saves the state of Florida significant funding since the cost of providing skilled nursing home care is over three times that of providing HCBS.

Despite their desperation, the application process for the LTC Waiver took Duane and Nancy over a year and a half. During this time, Duane received several denials for failing to complete the application correctly, but the denial letters never stated what needed to be corrected. Nancy repeatedly contacted the Department of Children and Families (DCF) and the Agency for Health Care Administration (AHCA) for assistance, only to encounter contradictory information and indifference. “There are too many hands in the pot, so there’s so much miscommunication,” according to Nancy. Eventually, with the assistance of a Medicaid planner, Duane was approved for enrollment in the LTC Waiver program in November 2022.

However, their problems did not stop there. Duane and Nancy were not informed of Duane’s approval until four months later in March 2023. Additionally, instead of being able to select the Medicaid managed care plan that best suited their needs, Duane was automatically enrolled in a plan that did not contract with the adult daycare facility located in their county. Without daycare services for Duane, Nancy would be unable to appropriately address her own medical conditions by attending her medical appointments and going to the gym, which her doctor insists is critical to maintaining her physical health. Yet, since their assigned managed care plan did not cover the daycare services, Nancy and Duane were forced to pay out of pocket and now have over $ 5,000 in credit card debt. With a combined monthly income of only $2,036 from Duane’s Social Security Disability, this debt is another overwhelming burden.

Even more, the managed care plan failed to provide Duane with any of the medically necessary services needed to keep him safely at home: incontinence supplies, home health aides, nursing, and respite care. Desperate for these services, Nancy enrolled Duane in hospice care, which provided him with some of the services he needed. And eventually, on July 1, 2023, Nancy, as Duane’s power of attorney, was able to switch his Medicaid managed care plan to one that contracted with the local adult daycare center. Then, after finding out that Duane could not get both hospice care and daycare benefits, Nancy made the difficult decision to revoke his hospice coverage after only six weeks. And yet again, Duane was not getting all the medically necessary services he should be entitled to (incontinence supplies, home health aides, etc.) even with the new managed care plan. Instead, his plan of care improperly over-relies on Nancy to provide all of his care for free. When Nancy asked Duane’s caseworker if she could be paid for providing caregiving services to Duane, Nancy was not given information about enrolling in the plan’s Participant Directed Option (PDO), a service that allows an enrollee to choose their own home caregiver such as a family member or friend. Instead, Nancy was incorrectly told that she had to choose between daycare and PDO services for Duane as the plan would not cover both.

After finally getting into adult daycare, Duane suffered another seizure and had to be hospitalized. He is now in an assisted living facility. On top of this, Nancy faces eviction as the city has told her that she can no longer keep her trailer on her sister’s property.

Duane is fortunate to have the support of his wife and advocate, Nancy, who tirelessly searches for ways to improve his life and ensure he is treated with dignity until the end. Now, she wants to help improve the system overall:

“I want to make sure that no one has to go through this again… Anything I can do to be a part of this change, I will sign up.”