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HOLIDAY, Fla. — Inside Daina Rogers’ home, a lot can be heard.
Mayik Vallejos, her son, likes to watch movies on the TV, play on an iPad and watch a show on a phone — all at the same time.
The combination of noises would overwhelm most, but it soothes this nonverbal 10-year-old.
Daina said Mayik has developmental delays, uses a G-tube for medications and hydration and has tubular sclerosis.
“That is where benign tumors form on the organs. He has got 32 on his brain,” said Rogers.
Mayik is considered a medically fragile child, and he receives care through the state because of this status.
“So here are the seizure logs. These are — the nurses obviously take their own notes — but we need these for neurology,” said Rogers.
For a few years, Rogers has gotten in-home nursing care for Mayik through Sunshine Health.
“It was 136 hours a week,” said Rogers.
But now, it is 84 hours. Earlier this year, Rogers received a denial letter when she went to recertify Mayik’s coverage.
Rogers says she had to recertify every 60 days.
“So they come back and say, ‘OK, well, while he does qualify for the 84 hours a week, 12 hours a day, seven days a week, we’re not seeing a medical necessity for overnights,’” said Rogers.
“So when I went ahead and appealed that, they went and said, ‘OK, he doesn’t qualify for no hours.’ So they took every hour I had away.”
Rogers went into panic mode. In the appeals process, Rogers said a lapse in continuation of care happened.
“I was really freaking out, you know, I was, I was crying at work. My kids, I was crying at home. My kids like, ‘Mom, you’re crying all the time. You’re so upset,’” said Rogers. “And I’m like, because you guys, they’re so young, they don’t understand.”
Rogers is still fighting with Sunshine Health over the 84 hours, trying to get it back to 136.
Rogers said she is not alone, that she knows several other parents facing the same issue.
Spectrum News reached out to Sunshine Health about the cases being denied, and they never shared a statement as to why.
Spectrum News also reached out to the Florida Agency for Health Care Administration. They also did not respond with a statement.
Rogers said the last eight months have been a nightmare.
“I function and I do everything I’m supposed to do with a smile. But inside I’m like dying,” said Rogers. “Why is it only Sunshine? Why only them? That is the big question. Why? I want to know why.”
For now though, that means living with the 84 hours.
Rogers hopes she can one day get into the state’s Paid Caregiver Program, so she can be paid as Mayik’s caregiver.
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Erin Murray
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