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"Save My Care" Bus Tour Participants Speak Against Medicaid Block Grants

Michael Phillips is a 36-year-old Tampa resident who enjoys Starbucks coffee, watching movies and hanging out with his friends.

He has spinal muscular atrophy, which has severely limited his ability to move his body since birth -- and more recently -- left him unable to speak.  

But it hasn’t taken away his voice.

The “Save My Care” Bus Tour made a stop Friday in Tampa so doctors, patients and caregivers could advocate against repealing the Affordable Care Act, and against the congressi6onal Republican push for Medicaid block grants.  

Opponents like Phillips say Medicaid block grants -- which would let the federal government set each state's Medicaid spending amount in advance --  would limit access to care.

Phillips spoke in front of the bus Friday morning using assistive technology called a “NeuroSwitch.”

“If Medicaid services are cut or capped because of block grants, I could lose everything. I could go from living at home to living in an institution,” Phillips said.

Medicaid lets him live at home with a personal care assistant. It pays for the device that allows him to speak and gives him the freedom to spend his free time working with developers to improve devices like the NeuroSwitch to help people like him communicate with friends and family.

Without that, Phillips said, "I don't want to live such a life. Nobody would."

Phillips said he will continue to fight to keep the Affordable Care Act, and to expand Medicaid.

A St. Petersburg doctor also spoke against block grants for Medicaid.  

"We already have this experiment here in Florida that's been going on for several years where they take this pot of money and they give it to private Medicaid providers and we find that that limits access to care,” said Dr. Mona Mangat. “You either don't have providers for miles and miles, you have a lot of red tape to try and get through to get access to care."

The Save My Care Bus Tour is a two-month, nationwide tour focused on telling the stories of Americans who could be affected by a repeal of the Affordable Care Act and changes to Medicaid. So far, the bus has held 39 events in 18 states.

Daylina Miller is a multimedia reporter for WUSF and Health News Florida, covering health in the Tampa Bay area and across the state.