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    Alene | Chapter 2 (April 2021)

    Jacksonville, FL


    As someone who lost the use of her legs, Alene, an independent retiree, relies on Medicaid home health aides. But the Covid-19 crisis has taken its toll on the availability of home health aides, and she has been forced to spend many days--especially weekend days--alone.


    In this video, Alene shares how days at a time go by without any aides due to terrible underfunding and lack of pay for Medicaid home health care workers. People like her,  and the front line healthcare workers who take care of them, need  Congress to provide increased resources for the program. 

  • Since spinal surgery left her wheelchair bound, 75-year-old Alene has tried to carry on the best she can, living in her own home, independently and with dignity. While she may not be making the rounds with the ladies golf league in Jacksonville like she used to, she’s smart and resourceful. 
    Alene has been able to stay safe and independent because she’s enrolled in Florida’s Medicaid Long-Term Care (LTC) Waiver program, where enrollees receive home health care and other services needed to live at home as an alternative to nursing home care. These Medicaid Services  - Home and Community-Based Services (HCBS) - are provided to eligible individuals through Medicaid managed care plans.
    Alene feels she made the best decision to stay out of nursing facilities. But she needs help with her daily activities. Alene depends on the visits of home help aides for bathing, changing clothes and assistance with daily household tasks.
    The Covid-19 crisis however has taken its toll on the availability of home health aides, with agencies unable to meet the demands of clients, who depend on reliable help. Alene is one of many disabled and frail seniors who have been impacted.

    “It’s not the aide’s fault,” Alene says. “The home health agency cannot find anyone to come.” 
    Consequently, Alene has been left alone--especially on weekend days, unable to change herself or bathe, potentially exposing her to bed sores, UTIs and other infections that could be life-threatening.
    FHJP first told Alene of her right to a “gap plan” when she first shared her story with the Health Justice Stories Project in July 2020. Under the contract between the state Medicaid Agency and each managed care plan, Plans must provide enrollees with what is called  a “Service Gap Contingency and Back-up Plan,” informing the enrollee of resources available --and not rely on the enrollees “informal support system” unless that is the enrollee’s choice. Under the contract, the managed care plan must ensure that gap services are provided within 3 hours.  After learning about her right to a “gap plan,” Alene began asking her case manager for it in July 2020.  Since that time, case managers have come and gone. Some denied that there was such a thing as a “gap” plan, and one case worker wrongly insisted  that she (the enrollee) is supposed to write it and it should rely on the enrollees' friends and families. 


    “My current case worker agreed to look it up, and she confirmed that the managed care organization is supposed to provide me with a gap plan so when my home health agency says they don’t have anyone to send, I can call a second agency.” This was in October 2020.  But as of April 1, 2021 Alene still did not have a plan. 

    "People in my situation should not have to spend another day alone in their wheelchair without a caregiver," Alene says. "We need funding and incentives to increase the pool of workers willing to provide care for Medicaid patients."

  • “My case manager is trying, and she has other clients she’s trying to find a backup agency for, but she can't. Those people are also left without any help.”


    Alene explained: “While It has always been spotty, there have been times when my aides did come 7 days a week, just like they are supposed to in my care plan. But things have definitely gotten worse in 2021--and especially on the weekends.”


    More and more since COVID, Alene’s home health agency has told her they cannot find anyone for the weekend. But Alene’s need for an aide does not disappear on weekend days. She has no use of her legs and is confined to her wheelchair. Alene cannot shower or bath or fully change herself without an aide.


    Alene has been left alone for entire weekends, as well as weekdays.
    There are a number of home health agencies in Jacksonville. “I’ve called them,” Alene said. They told me: ‘I'm so sorry, but we don’t accept Medicaid patients.’ And that’s the bottom line--it comes back to the money. If Medicaid paid more, they could expand the number of agencies who take Medicaid patients, and people like me would not be left alone.”
    Hopefully this situation will change in the very near future. The recently enacted American Rescue Plan (ARP) provides additional federal matching funds for HCBS to be spent between April 2021-March 2022. One way states can use these short term funds is adopting policies that will increase pay for direct care workers. Accessing this funding ASAP is critical for Alene. “People in my situation should not have to spend another day, alone in their wheelchair without a caregiver," Alene says. “We need funding and incentives to increase the pool of workers willing to provide care for Medicaid patients.”


    And while the APR funding is only for one year, going forward, the Biden administration has proposed a $400 billion expansion of Home and Community based Services that could begin to fix a terribly under-funded system, where employees are severely underpaid. Average wages are around $12 an hour and workers often have no benefits, including sick leave and healthcare insurance. States are not required to fund home-based care and the quality of programs vary significantly. Florida residents requesting assistance often wait years to enroll. The enhanced funding would allow Florida to expand the program to seniors on the waiting list and enhance existing services as well as improve wages for home health aides.

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