Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

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Last September I wrote about a story that I found completely harrowing. Do you remember this?

Florida has been removing children with complex medical needs from their homes against their parents wishes to save money. The children are placed in nursing homes for the elderly, often not located hours away from their families and receiving little to any stimulation. Never going outside. Not living with other children. Receiving less than 3 hours of education a week.

If May had been born in Florida – they would have attempted to force us to place her in an institution from birth.

From The San Francisco Chronicle (and it goes to show how little coverage this is getting that no Florida media outlet has written as lengthy a piece):

“the state turned down nearly $40 million in federal dollars for a program that transitions people from nursing homes back into the community. The state has also been paying community-based providers less, reducing payments by 15 percent last year because of legislative budget cuts, the letter stated.

Yet the state implemented policies that expanded nursing home care, by offering facilities a $500 enhanced daily rate for caring for children, which is more than double than what the state pays for adults, according to the letter.”

So, it didn’t even save the State money and for nursing homes it made money.

So, what happened next?

For one, my petition was received by the State. I imagine it languished there until, a couple of months later, when I received an email saying it was being read – which, to be fair, is more than I thought would happen.

Early on in his career, Governor Rick Scott started the “Conservatives for Patients’ Rights, which advocated for free market principles of choice, competition, accountability and personal responsibility in health care.”* In other words, if you are sick, you are accountable for your own health and you have a personal responsibility to pay for it, we don’t have a community responsibility to help you.

And, you know, that’s easy for babies like May – disabled through no fault of their own – because they are born with wads of cash.

But, two things were going for these vulnerable children: 1) the Attorney General’s damning report, and 2) a major lawsuit against the State by the family. In tandem, this meant that Florida had to make a sharp U-turn because they are facing serious financial repercussions for their policies.

This past week, Florida overturned their rules regarding funding for severely disabled children. As I reported on BabyCenter, “Until now, parents were required to provide complex medical care to their child, even 24-hour medical care, that should have been left to trained medical staff. Florida would not fund in-house care, sometimes even under court order, and so families were forced to give up their children or watch them die.”

Florida, “will now provide in-house medical care to children so they can live in their own homes with their families. This has the potential to be a complete reversal of their policy, after months of vehemently denying the charges laid against them.”

Fingers crossed, folks.

*From Governor Rick Scott’s web site.

What do you think are the chances that Florida will reverse its policy and support these children?

Want more? Read my first post on Mama Lewis about the children. Or, read my original report on BabyCenter What’s worse: being born disabled, or in Florida?