• 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.”

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

  • 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?”


    “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.”

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