Fernando Perez and his wife spend their days caring for their son, Adryan, ensuring his many needs are met. It's been their way of life for the past 30 years, after Adryan was born with a series of medical issues.
"He couldn't walk," Perez said. "He had a form of muscular dystrophy that affects the lower extremities."
Adryan was also eventually diagnosed with autism and by the time he was 8, Perez said, he was having seizures. Adryan had been receiving Social Security and Medicaid for years to help cover his medical needs.
"The care is expensive, Perez said. "He has a Medicaid waiver budget that takes care of his supplies and his care."
Then in November, Perez received an unexpected letter from Social Security saying his son had died. It was an obvious mistake and, at first, Perez said he wasn't worried.
"His benefits were intact and his check had rolled in so I hadn't paid that much attention to it, until the inevitable happened on December 1," he said.
That's when Adryan's benefits stopped. Perez says it took him a few days, but he was able to get Adryan's Social Security benefits back. When it came to Medicaid, Perez said it was showing inactive all through that process, leaving Adryan without the food and many medications and supplies he depends on every day. Perez paid out of pocket for those, but said his biggest worry was over the loss of medical benefits.
"I was very, very concerned about what could happen financially if Adryan had a crisis," Perez said.
The family tried to fix the problem.
"I'm pretty good about navigating the system but these things got really out of control," Perez said. "When you get 30 letters in 30 days from Social Security, which is more letters than I've gotten in 30 years, you need help."
NBC 6 Responds contacted the Florida Department of Children and Families about Adryan's situation.
"Within 48 hours I received a call from DCF saying that Adryan was gonna be reactivated right away," Perez said. "I didn't think it was gonna happen but, yeah, I was pretty shocked."
Still, Perez was worried this could happen again.
"I think the system needs fine-tuning," he said. "I think that people should not have to go through what I went through and … go through a situation where they might need daily medical attention and if they don't have any coverage for 30 to 60 days, what are they going to do?"
The Social Security Administration told NBC 6 Responds out of the "…millions of death reports we receive each year, less than one-third of 1 percent are subsequently corrected" adding: "We take immediate action to correct our records."
When asked why it took longer to reinstate Adryan's Medicaid benefits, a spokesperson for DCF said she could not share specifics on what went wrong, citing privacy laws.