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Barbara raised her boys right

Posted on Wed, Dec. 06, 2006email thisprint this

State denies sick boy $360 for blanketsState officials are spending thousands of dollars to fight a disabled boy's request for $360 worth of special blankets to keep warm.



LOVING TOUCH: Kevin Estinfil, who is severely disabled, needs thermal blankets that would cost the state $360 a year. State officials are spending thousands of dollars to fight his request

Kevin Estinfil is a badly disabled kid. He has severe cerebral palsy, is blind, has a shunt in his brain to drain excess fluid and has daily seizures. And his body can't control its own temperature.

Kevin, who is 12, can get as cold as 93 or 94 degrees, and he can't communicate when he feels pain or discomfort.

What would help keep Kevin warm, his doctors say, are special thermal blankets, which cost $10 each. He needs about three a month, for a cost of about $360 a year.

But for more than a year, the state Agency for Persons with Disabilities has refused to pay for them. The blankets, they say, ``have not been determined to be medically necessary.''

To make its case, the state has racked up thousands of dollars in legal fees fighting Kevin, who lost an appeal before a state hearing officer and is now appealing to the Third District Court of Appeal in Miami-Dade.

'I keep thinking, `It's a blanket. It's not like he's asking for a car,' '' said Lizel Gonzalez, Kevin's lawyer at Legal Services of Greater Miami. ``Give the kid a blanket. His life is hard enough.''

JoAnn Carrin, a spokeswoman for Attorney General Charlie Crist's office, which has represented the disabilities agency during some of the litigation, declined to discuss Kevin's case. ''This is ongoing litigation, and I wouldn't be able to comment on specifics,'' she said.

Lindsay Hodges, a spokeswoman for the disabilities agency, said she, too, could not discuss Kevin's case in detail. But, she added, agency officials were reviewing the case late Tuesday in an effort to determine whether more could be done to help the boy.

''We are concerned when any family feels their needs are not being adequately met,'' Hodges said.

``We are exploring other options that may be able to provide this service to this family.''


Ninety pounds and chubby-cheeked, Kevin lives with 14 other severely disabled children at a specialized group home in North Miami Beach called Baby House, which is run by United Cerebral Palsy.

He has lived there since 1999. His caregivers feed him through a tube in his stomach. They drain his tracheostomy and take his temperature constantly.

Kevin's condition worsened a couple of years ago when he suffered a series of severe seizures, which led to even more brain damage. Kevin brightens when his mother and sisters -- whose voices he recognizes -- come for a visit.

''Kevin is a severely disabled child,'' said one of his doctors, Julio Casas, who works at Baby House. ''He has a severe seizure disorder, and just about anything can set him off.'' Including getting cold, Casas added.

On Tuesday, Kevin -- dressed in blue jeans, a yellow, black and white jacket and matching ski cap -- slept in his wheelchair as teachers and aides cut and pasted paper snowflakes with other children in the home.

One little girl spoke of her excitement about a trip today to Santa's Enchanted Forest.

Alliance Home Care, a medical supply company that provides equipment to Baby House, has been giving Kevin thermal blankets free of charge -- along with diapers, feeding supplements, sterile water for his breathing tube and other equipment the state did agree to pay for but hasn't, said Carol Montiel, the nurse who runs Baby House.

''They are not getting paid,'' Montiel said. ``Not one penny this year.''

Kevin's caregivers also asked APD to pay for extra surgical masks for the nurses and doctors who care for him. The price tag for the masks: $288 per year.

''Kevin's condition is medically complex,'' one of his doctors, Antonio Rodriguez, wrote to APD. ``He has a compromised immune system and is highly susceptible to infection . . . His risk for contracting infection is greatly increased because he lives with almost a dozen children, all of whom are severely physically and mentally disabled.''


APD denied the money the masks.

''The documentation submitted does not indicate that Kevin has a compromised immune system,'' agency officials wrote.

But, in a rare move, a state hearing officer, Robert Akel, overruled the agency and allowed payments for the masks following a June 12 hearing.

Montiel said she spends a lot of time testifying on behalf on the 15 kids she cares for. ''Last week,'' Montiel said, ``I was in court three times. It's a lot of time.''

The review of Kevin's care plan was made by an employee of Maximus Inc., a private company that is under contract with the state to help lower costs in the state's developmental disabilities program.

The worker never examined Kevin, or even met him, records show, because the contract doesn't require it.

Nor had he spoken with Kevin's mother or doctors before the June hearing.

Akel, who works for the state, agreed with APD that Kevin did not need the thermal blankets.


The state suggested that Kevin be given instead a heating pad, which is available through Medicaid, the federal insurance program for the needy.

One of the pads the state recommended is marketed to treat ``muscle and joint pain, acute lower back pain, arthritis, edema, wound and post-operative drainage.''

Medicaid would pay about $250 for the heating pad, said Montiel.

Kevin's doctors say the heating pads would not work for Kevin, for several reasons.

First, the pads require that Kevin be able to turn a switch on and off, to regulate his warmth. Kevin is incapable of such activity, his caregivers say.

What's more, said Montiel, ``he cannot let me know if he's being burned. We wouldn't know unless we stripped him down whether he was burned.''

And the heating pads also are too small, Kevin's doctors say.

Caregivers also fear Kevin, who wears a diaper, may soil his blanket, which is not disposable. Florida's Medicaid plan allows for only one such blanket ''for life,'' though an assistant attorney general, James D. Murdock, wrote in a court document that ``limitations may be exceeded for [patients] under the age of 21.''


( 19 comments — Leave a comment )
Dec. 8th, 2006 04:59 pm (UTC)
Bueracracy in action. It's a beautiful thing, that.
Dec. 8th, 2006 05:00 pm (UTC)
WTF? Thousands of dollars to fight $360? If I were a Florida taxpayer, I'd be severly pissed right now.
Dec. 9th, 2006 03:05 pm (UTC)
Read my mind.
Dec. 8th, 2006 05:05 pm (UTC)
Florida is a stupid state, stupider than NY and that's saying a lot.


BTW, why does the blanket cost $360? I mean what is it made of? I bet anything the material costs $.02.
Dec. 8th, 2006 05:11 pm (UTC)
The blankets are $10, so they're looking to buy 36, 3 for each month in case one is soiled.
Dec. 8th, 2006 05:59 pm (UTC)
Okay, still $10 is a lot for a blanket, unless it's like cashmire or something.
Dec. 8th, 2006 06:04 pm (UTC)
Did you read the article, they're 'special' thermal blankets that will regulate his body temperature becasue he can't do it himself
Dec. 8th, 2006 06:18 pm (UTC)
Re: lmao
even if you forget the thermal stuff, i'm sorry, but 10$ is NOT alot for an effing blanket.

Dec. 8th, 2006 06:17 pm (UTC)
...10$ is a lot for a blanket? where do you get all your blankets from? the dollar tree?
Dec. 8th, 2006 07:36 pm (UTC)
seriously, those ratty ass throws that turn into a gian lint ball (literally) the first time you wash them are even $12.99 at Ross!
Dec. 9th, 2006 09:01 pm (UTC)
Dec. 8th, 2006 05:20 pm (UTC)
Ya know, I read shit like this I wonder if it is worth it for a person this disabled to even live. God knows I wouldn't want to have to make that decision, but whenever i hear about some premature infant being born that's can fit in the palm of a man's hand, I shudder to think of the kind of difficulties that child will face--shattering physical and mental disabilities that wiil severely reduce his or her quality of life.

Sometimes I wonder if medical science has replaced wisdom with technology.
Dec. 8th, 2006 05:23 pm (UTC)
My sister was one of those tiny babies, but now she's 10 years old and taller than me, stronger too.

On one hand I think, what can he contribute to society (truthful answer is nothing) but on the other, is it fair to let him die?

And then what gets me mad is Terry Schiavo. Congress was called back into session for that bitch, Lord knows how much money that cost.
Dec. 8th, 2006 05:51 pm (UTC)
contributions... ..
what can he contribute to society

if this were the benchmark for life... there would be no room for graveyards... Kevin Federlin, Paris Hilton, and Ricky Lake would all be dead.. along with all the homeless, all the elderly, and most cowboys fans...

seriously though... its a slippery slope to eugenics once we sttart sayign which life is worth keeping, and which is worth dying... what ebcomes the stndard... what become the tests...
Dec. 8th, 2006 06:05 pm (UTC)
Re: contributions... ..
Point understood, but I was referring to people who are being kept alive by machines.
Dec. 8th, 2006 06:42 pm (UTC)
Re: contributions... ..
Kevin Federlin, Paris Hilton, and Ricky Lake would all be dead.. along with all the homeless, all the elderly, and most cowboys fans...

Dec. 8th, 2006 08:58 pm (UTC)
My sister was one of those tiny babies, but now she's 10 years old and taller than me, stronger too.

I wasn't that tiny, but I was about 5 weeks premature (last time in my life I was early for anything) and had to be incubated.

On one hand I think, what can he contribute to society (truthful answer is nothing) but on the other, is it fair to let him die?

And then what gets me mad is Terry Schiavo. Congress was called back into session for that bitch, Lord knows how much money that cost.

It's a difficult decision. Given that this poor boy is at least partially aware, and does respond to people he knows, I'd say that the state has an obligation to help him spend what time he has being warm, at the very least. But I can't help wondering what happened to him--was there fetal alcohol syndrome, or something else going on that caused this?

And yeah, it pisses me off that while Florida doesn't want to spend $360 for blankets for him, but they had no problem with Terri Schiavo. Think of the white women!
Dec. 9th, 2006 03:11 pm (UTC)
It's a blanket! Florida give the poor boy his blankets! I just love how hypocritical we are in the US. Gotta stick our noses into every other country's business and "fight the good fight" but we won't take care of our own. *sigh*
Dec. 9th, 2006 05:39 pm (UTC)
I almost want to start a damn fund so this boy can get all the blankets he needs for years to come.
( 19 comments — Leave a comment )