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Please Fix Florida's Medicaid Gap, Mother of Disabled Son Urges

It is extremely difficult to qualify for Medicaid in Florida.

You must make less than a third of the federal poverty level and have a dependent child. That’s about $7,000 a year for someone in a family of three. Expanding Medicaid eligibility would especially benefit low-income older adults and the many unpaid and low-paid caregivers in Florida.

Among opponents of expansion, the most common pushback is centered on the complete misconception that it would only benefit able-bodied non-working adults. Nothing could be further from the truth. While 63% of those enrolled in Medicaid are working, another 30% are out of the workforce because of school, a disability, or caregiving responsibilities.

This week, the Orlando Sentinel highlighted the story of Alison Holmes, the mother of 17-year-old JJ, who is severely disabled. As someone who would benefit from Medicaid expansion, her story is more the rule than the exception.

In her own words:

My 17-year-old son, JJ, is severely disabled. He almost died at birth, and as a result was left with catastrophic disabilities. He can’t walk, talk, sit, feed or care for himself, and he requires around-the-clock care. Like most moms, I pushed through the difficulties and knocked down the barriers to ensure my son’s safety and security. Unfortunately, for me and JJ, the funding decisions made by our legislators are among the many barriers I can’t seem to get around.

JJ has been on the Medicaid wait list for home and community-based services for over 14 years. While this program continues to be targeted for cuts nearly every legislative session, I still have hope that he will eventually receive services. When his number comes up, JJ will receive services like skilled nursing and case management in the comfort of our home. I’m in my mid-50s with debilitating back and hip problems that are, of course, made worse by lifting a 17-year-old boy day in and day out. As much as I hate to admit it, my health is failing as I desperately try not to fail my son. I know that without additional help, I may eventually be physically unable to continue caring for JJ at home.

As JJ’s full-time caretaker, I do not qualify for Florida’s Medicaid program for health insurance, which leaves my medical issues untreated. Our leaders in Tallahassee say they don’t want Medicaid to be available to “able-bodied adults,” but I am trying to remain able-bodied. Access to health care is what I need to do so.

As I understand it, I fall into the Medicaid gap because Florida’s leaders have refused to expand the Medicaid program. While it sounds like an expensive venture, the federal government actually picks up 90% of a state’s cost to expand Medicaid. Conservative estimates are that Medicaid expansion would bring in over $4 billion annually, which economists tell us will generate between $6 billion and $7 billion in economic activity.

My legislators can’t feel my pain. I’m sure that they have no clue about my sleepless nights and exhausting days. Despite my best efforts to reach them by phone, by email and in person, my voice has been ignored. Still, I wonder why they think I don’t deserve health care? Why do they ignore my pleas to give my son the best life possible?

Without Medicaid expansion, I will have no way of accessing affordable healthcare so that I can properly care for JJ. I am absolutely sure that without home- and community-based services for JJ, I will lose my son to the system — a mother’s worst nightmare. Yet today it’s an increasingly likely option, because of the failures of our lawmakers. The prospect of someone as defenseless as JJ being forced out of a loving home and into a state facility because of shortsighted governance is gut-wrenching.

Any mother will confess that she’ll move heaven and earth for her children, no matter how hard the lift. Every now and then, though, we need a little help. Medicaid expansion is not a heavy lift for our lawmakers. And I’m asking for help.

What can you do?

If you're a caregiver, know someone who is, or just support better access to care for hard working Floridians, you can help by sharing your story and joining the Health Care for Florida coalition. You'll also receive information on the latest developments, campaign activities, and other opportunities to take action.

Florida Voices for Health and the Health Care for Florida coalition are actively leading a campaign to expand Medicaid and alleviate caregivers’ burden. Floridians like you can help our fight for Medicaid expansion through three simple tasks:


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