• Alene

    Jacksonville, FL


    Alene, a 74 year old Brevard County native, worked her entire life. After retiring from her career in customer service, she found herself itching to get back to work. In her late 60s, she started a second career as a security guard. But at age 71, she started to experience severe pain and trouble walking.

  • Alene’s life dramatically changed with the surgery needed to remove a growth from her spine. Once an active member of the ladies golf league in Jacksonville, Alene has been confined to her wheelchair since her surgery and now needs assistance for basic activities of daily living, such as bathing and toileting. Although she qualifies for a nursing home level of care, like many disabled seniors, she much prefers to remain in her own home. Based on her limited income and level of disability, she was able to enroll in Florida’s Medicaid Long-Term Care (LTC) Waiver. Enrollees in the LTC Waiver can receive home health care and other services needed to live at home as an alternative to nursing home care. These Medicaid services, which are also referred to as Home and Community Based Services (HCBS), are provided to eligible individuals through Medicaid managed care plans.


    After Alene was found eligible for the LTC Waiver, her managed care plan determined that she needed 35 hours of care from a home health aide. While the Plan’s determination that Alene needed 35 hours of home health care per week was appropriate, there were days when the aides did not come; or they came late and left early (more on this “gap” problem later). But what forced Alene to change from her first plan (“Plan A”) to “ Plan B” was the fact that the products she was given “leaked and disintegrated; they were like a paper napkin.” Due to the terrible quality of the product Alene was unable to go to appointments or out in public without worrying about an embarrassing accident. “This poor quality product prevented me from living independently and with dignity.”


    Alene begged her caseworker for a stronger product, but the caseworker said she had no options. Finally, Alene asked the vendor why they didn’t work and his response was “This is all they got. If you want something better you need to switch plans.” She switched to Plan B in February 2020.


    Alene soon realized her life might now be even harder. First, it took Plan B over 2 weeks to send a caseworker to Alene’s house to do an assessment which was required before any services would begin. The case worker’s assessment slashed Alene’s home health aide hours from 35 to 14 and homemaking hours from 6 to 3.


    She begged her caseworker for the hours she needed. She pointed to the fact that she needed help bathing, toileting, and changing on a daily basis and that cutting her hours in half meant she could only bathe every other day. Her caseworker’s response was: “Well, you can wash half your body by yourself.”


    Fortunately, while Alene is severely limited physically, she’s smart and resourceful. She was able to navigate the complex appeals process on her own, including securing her right to continued coverage of 35 hours/week of home health care pending the outcome of her appeal. But not many consumers have the skills and perseverance needed to successfully defend their health care rights--especially frail and disabled seniors. “I could figure it out, and it was still hard, but what about other people who can’t speak English, who have dementia , what about them?”

    “It’s wrong to be put in that position. It's just not right to treat seniors like that.”

  • And despite getting her hours restored, she still has gaps in services. And COVID-19 has made it worse. For example, during one period in May, Alene went without any home health care for 3 days. One can only imagine what those 3 days were like: only being able to wash half her body and not being able to change clothes. Yet in telling her story Alene does not sound angry. She talks about the challenges of the health aides and expresses concern about other seniors.


    “That’s a concern to me. There are seniors out there whose services are being cut and they are just accepting the cut; they don’t know that they have rights to get those services reinstated or get some of their services back. Some plans will cut your services to the bone. My plan was ready to leave me alone 3 days a week. I wouldn’t have any help at all, I would just have to manage on my own. I worry there are other seniors out there who are being handled in this way”


    Finally, in sharing her story with Florida Health Justice Project, Alene learned about her right to be provided with a gap plan. As explained in the Advocate's Guide to the Florida Long Term Care Medicaid Waiver, managed care plans much have a process for “immediately reporting any unplanned gaps in service delivery,” and they must prepare a “Service Gap Contingency and Back-up Plan,” informing the enrollee of resources available. This is a critical consumer protection. And, unlike a plan’s decision to deny, terminate or reduce a prescribed benefit (which triggers a written notice of the right to appeal), no one gets notices of gaps, or the right to appeal. “When my hours were cut from 35 to 14, I got a notice in the mail telling me of my right to appeal and to continue receiving services at the current level, pending the outcome of my appeal." Like many, Alene was not aware of her right to a gap plan “I thought I just had to put up with the fact that home health agencies sometimes can’t find health aides to come to my home for the full amount of time I need help, ” Alene related. “Since asking my case worker for a copy of my gap plan, I've had much less of a problem. I'm sharing my story to help others like me learn about their rights.”

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