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Without Health Care, How Can I Continue to Care for My Disabled Son?

Debbie F. is the full-time caregiver for her 21-year-old son who is on the Autism Spectrum (ASD) and has Down Syndrome. He is dually enrolled in Medicare and Medicaid. Debbie used to be covered under Medicaid, but because her son is now 21 years of age, she lost her Medicaid coverage during this year’s Medicaid redetermination process.

Debbie has been trying to enroll her son in the Medicaid Consumer Directed Care Program so that she can be his paid full-time caregiver. In order to apply, she first needs to pass a 'readiness test' with a score of 85% or higher. She has tried several times but so far has not been able to pass the test. The only advice Debbie receives is to try again. But Debbie says, “If God didn’t think I could handle it, he wouldn’t have given my son to me.”

The family was hit hard by Hurricane Michael, which left extensive damage to their home and the van they used to transport Debbie’s son. The van’s lift is now no longer operational. FEMA and the APD (Agency for Persons with Disabilities) did little to help the family. They are thankful to have received some assistance through their local church and United Way instead.

Debbie has been using the free clinic in Bay County to manage her own general health issues. However, after having COVID, she’s experiencing a worsening of her pre-existing conditions: chronic inflammation, asthma, and now anomia (inability to smell or taste). She is unable to access the specialty care that she needs to fully recover. Without treatment, Debbie’s health will continue to become a greater and greater barrier to caring for her son. “Preventative care is essential to every caregiver,” she states.

Debbie is in the process of mediation to qualify for share-of-cost coverage under Florida’s Medically Needy program. In the meantime, she is paying out-of-pocket for all her medications. Though her income is low enough to qualify for Medicaid, Debbie is no longer eligible because her son is over 18. Her income is too low to qualify for tax credits to help pay for a private health insurance plan, so Debbie is left with the choice to pay a $700/month premium, or to forgo coverage entirely.

Many Floridians share Debbie’s experience of being in the ‘coverage gap.’ They do not qualify for Medicaid or for the Marketplace tax credits that make private coverage affordable. They are left with few options and many, like Debbie, experience worsening health conditions without the funds to pay for care.

For over 10 years, Florida’s state legislators have refused the opportunity to expand Medicaid to cover those like Debbie who are in the coverage gap. Florida is one of just 10 holdout states that has not expanded Medicaid. “Without Medicaid expansion,” Debbie explains, “I have no way of accessing health care so that I can properly care for my disabled son. How is this humane?” In addition to offering the security of coverage to nearly half a million Floridians, Medicaid expansion would save our state $200 million per year. States that have expanded Medicaid, expansion has proven to dramatically lower rates of uninsurance, improve overall health outcomes, boost state budgets, provide financial support for local hospitals and clinics, and create jobs, to name just a few benefits. Click here to join us in calling on our state lawmakers to Expand Florida Medicaid.


We want to hear from you. Many Floridians face serious obstacles when trying to access health care. Common barriers include cost, limited local providers, local hospital and clinic closures, lack of coverage, and insurance not accepted. If you've struggled to access health care in Florida, your story can be a powerful catalyst for change. We amplify these experiences to help our legislators and voters understand the health care challenges being faced by everyday Floridians. Complete the form below to share your story.


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