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My Toddler Lost Disability Services. Now What?


Val D. is the mother of a three-year-old girl, born with spastic quadriplegic cerebral palsy. Her daughter’s needs are numerous and depends on the disability care they receive through Medicaid. Val typically receives a recertification notice in the mail when it's time to update her daughter's Medicaid application, but this year she didn't receive any written communication. Instead, Val received a phone call on February 20 informing her that her daughter's application was due by March 1, 2024. Val quickly submitted the application before the deadline, only to be told the application was denied. Her daughter's coverage was terminated, and Val had to wait 30-45 days to reapply. Her caseworker advised that it can take up to six months for a decision to be reached on the new application.


Meanwhile, Val's daughter is left without the critical services she depends on to live, including Occupational Therapy, Physical Therapy and Speech Therapy. She receives her nutrition through a gastronomy tube (g-tube) and only has enough tube feedings left for the next 30 days. “My daughter is non-verbal, non-ambulatory, has bronchial pulmonary lung disease, global delays, a g-tube, and hydrocephalus which needs to be monitored. A friend of mine told me her caseworker said it could take until September for things to get straightened out; my daughter should not have to wait that long!” Val continues to check frequently for updates, but sees no progress. She worries that if an emergency arises before their case is sorted out, her family will fall further into medical debt.

 

If you’ve lost insurance or struggled to afford health coverage and care, we invite you to share your experience because 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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