TAMPA, Florida -- It is a crisis involving cost, care, and compassion as the state struggles with how to deal with severely medically needy patients who are on taxpayer funded Medicaid.
Patients and their families have to deal with a red tape nightmare to get basic services. They say sometimes the mandated rules do more harm than good.
Michael Phillips, 32, has a breathing machine and needs EMTs to take him to doctor's appointments at Tampa General Hospital. Michael, who is immobilized because of a neuromuscular disease, communicates by blinking his eyes on a keyboard. Twenty-five years ago, he was the muscular dystrophy poster child, he was in a wheelchair, and he could talk. Now, he has to use a computer generated synthesized voice to talk.
"Well, I honestly feel like Hannibal Lecter," he says. "It's a little dehumanizing. They strap me, basically, to a stone slab. It's totally uncomfortable. I don't have access to my computer, so no communication. They basically take away everything that makes a person human, the ability to communicate."
Michael is forced to use an ambulance for his appointments, because the state won't allow his mother to use his Medicaid allotment to hire a $15 an hour helper to take Michael where he needs to go.
Michael's mother, Karen Clay, asks "How could anybody say that?"
Clay, a steely tough woman, is almost moved to tears as she says, "My Mike breathes through machines, he eats through feeding tubes, he is the strongest, bravest, toughest individual on this planet, and to be treated that way by the state..."
Clay says with a helper, most trips would be four hours, totaling only $60, much cheaper than an ambulance. "The average cost is roughly $372 per segment, which means going to the hospital, $372 coming back. Taxpayers should be absolutely outraged. It's ridiculous."
10 News went to Governor Rick Scott about this issue, but he referred us to the Agency for Health Care Administration (AHCA).
The governor says, "ACHA works every day to make sure that every citizen they care about, they do the best job they can."
Next, 10 News went to AHCA secretary Liz Dudek, who says, "Ambulances are typically used only if there is an emergency situation."
Dudek told us she wasn't aware of Medicaid patients being forced to use an ambulance for transportation. "So, if there is something you are aware of where we are paying for ambulances, I'm not aware of that, but I'd certainly like to look into that," she says.
And while Dudek looks into the issue, keep in mind the state spends more than $63 million each year on Medicaid transportation. However, there is a more concerning issue: according to an investigation by the U.S. Department of Justice, the state is violating the Americans with Disability Act by forcing these patients out of their home and into much more expensive managed care.
State Representative Mike Fasano says, "It shouldn't be. It shouldn't be. We need to be doing the opposite."
Fasano is outraged the Justice Department found that "the state tells more than 3,000 families with medically disabled children their loved ones are not capable of living at home, when in fact their care needs could be met at home."
The same goes for adults who are being pushed into nursing homes, like Michael Philips.
Fasano says, "We need to encourage people who don't need to be in a 24 hour/7 days a week long-term care facility, bring them back to their home, to a loved one."
In the meantime, many people, including Karen Clay, point out that the governor made his fortune in managed care, and still has close ties to the industry. "Because it's all about profit, and that's the bottom line," Clay says. "If somebody can make a profit off someone with disabilities, the governor and the state of Florida is all for it."
But Clay says she believes there is a more sinister reason for trying to force people like her son out of their homes and into managed care.
"As families, we know how to take care of our loved ones. This is the worst thing I can say about them, but I mean it 100 percent. The bottom line is they know that when families take care of their loved ones, they live longer."
The justice department agrees, and that's why so many are concerned about what is happening. On Monday, the state announced it will assign care coordinators to children that the feds say are being forced into adult nursing homes. The state says it is an effort to keep as many of them in their homes as possible.
However, an attorney who represents the families and has filed a lawsuit against the state says while it is a step in the right direction, it doesn't come close to solving the problem.