Approve a needs-based Medicaid program

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  Mirra is six years old, and has a very rare chromosomal abnormality. Due to an extra piece of chromosome, Mirra has suffered from an extensive list of health issues since birth and new issues arise on a regular basis. She has had a cleft palate repaired, swallowing issues, a kidney removed due to multicystic kidney disease, congenital heart defects, multiple gastric issues including stomach surgery for reflux, and severe developmental delays to name a few. Mirra is nonverbal and currently receives the majority of her nutrition through a g-tube.

  I ask that the state of Florida consider these health issues and the tremendous costs families such as ours face even with health insurance, and create a needs-based Medicaid.

    Often times, it is suggested that a parent(s) quit their job or surrender a life insurance policy so that they are considered low-income and their child can be eligible for Medicaid. This is unreasonable. We shouldn't have to give up good jobs, or savings for our children's future. We as parents, need to live up to our best potential, not our least potential, as we will be lifelong caregivers. The day to day stress of caregiving and wondering who will take care of our special needs children after we are unable to, or have left this earth, is always weighing on us.

  When Medicaid is not an option, families turn to the private health insurance option. There is the costly  monthly premium, copays, meeting the deductible, and then paying out of pocket for all of the much needed therapies, medications, and medical equipment that the insurance companies simply won't cover. Sometimes it can take multiple tests, or days in the hospital to find out why your child is sick or in pain, because they can't tell you. The costs add up quickly and put many families in a state of crisis. It's like we're treated like we're poor or we're treated like we're rich. There is no middle ground.

  Please help me make changes in Florida's Medicaid program. Our medically needy/ special needs families need to be able to take care of our children to the best of our abilities. Please help me create a needs-based Medicaid.

 



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