HEALTHCARE
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.



PETER ANDREW BOSCH/MIAMI HERALD STAFF

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.
Document | Order turning down Kevin's 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.''

BABY HOUSE IS HOME

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 SAYS NO

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.

AN ALTERNATIVE

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.''

Florida, the state I live in, is a real winner.

Silly me, I thought this was a forum for serious discussion. Thanks for proving me wrong GSS

Oh.

I thought it was a Pearl Jam message board.

Are you people serious? Give the kids some damned blankets already. What other side to this story is there? This kid is severely disabled and he needs some special blankets. Get him some – end of story.

How anyone can think the government should pay for anything for anyone that can possibly do anything for themselves and yet not help this poor kid is beyond me.

Do you think the government should pay for any and all things needed or perceived to be needed for all disabled people in this country? I am inferring that that is indeed your position since you stated there is no other side to the story, but I am offering you a chance to prove me wrong.

Also I'm not sure how you entangled the issue of helping the disabled with helping people who are not disabled, or why they should be mutually exclusive (which you suggested). Are you saying that not a penny should be spent on programs to help able-bodied people until all disabled people are 100% paid and taken care of? I guess it is worthy of being considered, but right now America has laws governing both these things and surely you don't suggest the laws be completely ignored? More likely you are just suggesting that the laws need to be re-evaluated, which is all from what you said I think I can agree with, assuming that is your intention.

Next time just say you don't understand. It is far less time consuming.

What I'm saying is that people on this board (you) are saying that perhaps this isn't the whole story. Please tell me what possible other side there is. This boy is severely disabled. In no way can he help himzelf. He needs blankets. Is there really another side?

My second comment was more general. Often times I see people on the board saying that health care should be provided by the government. My point was that if we aren’t going to take care of people like this, then people that can take of themselves should do so. My opinion, of course.

What are the other expenses of this place? How much money does the kid already need for health care? Why is he entitled to anything at all, because his life is "hard enough"?

I am not convinced that giving this kid thermal blankets, as simple as it sounds, is one of those things we should be doing, especially when it is presented with only half the facts in such a way as to criminalize the state and health care providers and make us feel awful for the kid.

another reason for my consideration to move out of the US when I can financially

pete, for real?

where would you wanna go?

pete, for real?

where would you wanna go?