• Medicaid | The Lived Experience:

    Seniors and People with Disabilities

    The Florida Medicaid program provides coverage for extremely low-income individuals 65 and older as well as for individuals who have been found to be disabled.


    For low-wealth individuals who need nursing home level of care, Medicaid provides coverage for over half of all Floridians in nursing homes. A limited number of people who qualify for the nursing home benefit based on their low income and high level of need can enroll in the Long-Term Care managed care program that provides home and community based services (HCBS). There is a waiting list for this critical program.


  • The STORIES, Information, Issues and Media

    Thelma and Hortense Chapter 2 | Orange County, FL

    Orange County, FL

    For years Thelma had been getting less than full-time pay as her mother Hortense’s 24/7 caregiver. When the Medicaid managed care plan increased Thelma’s service hours, it should have been good news. Instead, it became another insult. Without the plan taking any steps to inform her, Thelma couldn’t know to bill the additional hours. Now, she has to fight for back pay.


    Read More


    Duane and Nancy C. | Lake County, FL

    Lake County, FL

    A loving wife tried everything to navigate the complicated Medicaid home and community-based service program to keep her husband at home after his diagnosis of early-onset dementia.


    Read More

    Lia | St. Cloud, FL

    St. Cloud, FL

    While Lia’s appeal for additional personal care services was pending, she lost ALL of those services! Her home health agency blindsided Lia and her family by informing them that the agency would no longer be providing personal care.


    Read More


    Lia | St. Cloud, FL

    St. Cloud, FL

    Medicaid Long-term Care: A Managed Care Plan's Ongoing Failure to Provide Needed Home Health Services


    Read More


    En Español

    Haydee and Barbara | Miami, FL

    Miami, FL

    When you’re a caregiver, business owner and part-time teacher, 24 hours a day is never enough.


    Read More




    Veronica | Tampa, FL

    Tampa, FL

    The things you do for love.


    Read More





    Thelma and Hortense | Orlando, FL

    Orlando, FL

    Thelma quit a good job to care for her elderly mother, Hortense, who needs care 24/7. Although the pay for being her mom’s full time care giver was only $10.76 an hour, the Medicaid managed care plan said she would be paid for 41 hours/week. Instead, the plan keeps cutting Thelma’s service hours.


    Read More


    Shirley | Jacksonville, FL

    Jacksonville, FL

    After a stroke, Shirley cannot even get out of bed without the use of a special lift, which requires trained aides to operate. And while Medicaid home health aides take care of her during the week, moving her from her bed to a wheel chair, her managed care plan stopped sending aides on the weekend. She has been forced to spend entire weekends in her bed.


    Read More

    Alene | Jacksonville, FL

    Jacksonville, FL

    Alene’s life dramatically changed after a surgery needed to remove a growth from her spine left her unable to walk.


    Read More




    Alene| Jacksonville, FL

    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.


    Read More

    Qudsia | Miami-Dade County, FL

    Miami-Dade County, FL

    Qudsia shares her experience with Medicaid in Florida, and how it provides health coverage for her elderly mother and three children.


    Watch Video

    Stafford | Miami-Dade County, FL

    Miami-Dade County, FL

    Stafford shares his experience with Medicaid in Florida, and how it helps him afford his medications.


    Watch Video

    Comment Letter | Urgent suggestions for use of increased federal funds for HCBS


    The Florida Health Justice Project (FHJP) sent the state Medicaid Agency a second comment letter urging the state to use the new federal funds available for HCBS to address the problems Alene, Shirley, Hortense and Thelma are dealing with. Also, as in the first comment letter, FHJP urged the state to provide an opportunity for stakeholder engagement and to be transparent.


    Read Letter






    Comment Letter | State's renewal request for Long-Term Care Waiver


    The Florida Medicaid Agency recently sought approval for a 5 year extension of their current program that provides home and community based services (HCBS) to seniors and persons with disabilities as an alternative to nursing home care. The Florida Health Justice Project (FHJP) sent the state Medicaid Agency a comment letter flagging concerns with the state’s renewal request and citing the barriers to care facing Alene, Shirley, and Hortense.


    Read Letter






    Florida's Medicaid Long-Term Care HCBS

    A web portal containing a detailed overview video and related resource materials about Florida Medicaid’s Home and Community Based Services (HCBS) program. Produced in three languages - English, Spanish and Haitian Creole - this project helps extremely vulnerable low-income seniors and persons with disabilities struggling to stay at home and out of a nursing home navigate the HCBS program, a complicated and critical benefit --especially during COVID.


    Visit Web Portal

    Advocate's Guide to the Florida Long-Term Care Medicaid Waiver January 2021 (4th Edition)

    The guide provides a roadmap to the complex Medicaid program providing home and community-based services for frail elderly and disabled Floridians who want to stay out of a nursing home after they can no longer handle the routines of daily living.


    Read Guide











  • Read STORIES Of Other Floridians

    Relying On Medicaid



    Former Foster

    Care Children





  • Share Your Story

    Let your voice be heard! Please contact us:

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    Sharing your story --in your words and your voice-- is essential.
    Share Your Story | Soapboxx Video

    Share Your Story | Soapboxx Video


    In partnership with the National Health Law Program (NHeLP), we are using the Soapboxx video recording app to create short testimonials about how Medicaid has impacted you or a family member.


    Using your cell phone, tablet or computer, create a 20-90 second video about your experience with Medicaid. It's simple, easy and quick to do.


    Sharing your story on video will serve as a powerful advocacy tool to help educate the public, the media and policymakers in understanding how important Medicaid is for Floridians and their families.


    Learn How To Record Your Video


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    "The Lived Experience" of Medicaid recipients and their families.

  • We are grateful to the National Health Law Program (NHeLP) for their support of the

    "Medicaid | The Lived Experience" STORIES Project.

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