The Storytellers, Information, Issues and Media
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.
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.
St. Cloud, FL
Medicaid Long-term Care: A Managed Care Plan's Ongoing Failure to Provide Needed Home Health Services
Miami, FL
When you’re a caregiver, business owner and part-time teacher, 24 hours a day is never enough.
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.
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.
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 media coverage of Alene's plight:
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.
Miami, FL
Oscar and Olympia just want to be together, and live out their lives peacefully, with their pets nearby in the safety and security of their own home.
Naples, FL
In the midst of the COVID-19 crisis, Therese’s bureaucratic nightmare with her Medicaid Long-Term Care managed care plan entered a new chapter.
The Advocate's Guide To The
Florida Long-Term Care Medicaid Waiver
Because the Medicaid LTC program is complex, both for those applying and those enrolled, FHJP created an Advocate's Guide. And because all HCBS programs are chronically underfunded, the public and decision-makers need to understand how the lack of resources impacts individuals and their families.
The Advocate’s Guide to the Florida Long-Term Care Medicaid Waiver 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.
The Guide provides advocates with an overview of the authority governing Florida's Medicaid managed care long-term care waiver and a roadmap addressing basic questions including: who is eligible; how to apply; what to do if an application is denied or delayed; how the waitlist works; what to do if services are denied, delayed, terminated or reduced.
Share Your Story
Join the fight by letting your voice be heard!
Contact us if you or a family member need health care and are:
- Medical debt because Florida repealed retroactive Medicaid eligibility.
- Lack of home and community based services needed in order to stay at home and out of an institution.
- Have unmet oral health care needs.
Sharing your story—in your words and your voice—is part of the solution for each of these issues. Together we’ll make the case that its time for more resources to support home and community based services as an alternative to nursing home care.
We are grateful to the following funders for support of the STORIES Project:
