Seth Benjamin Petreikis was born July 21, 2010. He was born with a heart condition that required open heart surgery at 2 1/2 weeks of age. 3 days after surgery he was diagnosed with a rare, fatal disease called complete DiGeorge Syndrome. Only 5-12 children are born with this yearly. With this syndrome Seth has no T cells and cannot fight off any infection or virus. This condition is fatal by age 2.
Seth is in need of a life saving thymus tissue transplant. The only place those are done is at Duke Hospital in North Carolina under Dr. Louise Markert.
This procedure is not covered by our Medicaid. If successful, Seth's outlook is great. By the time he is 3 he will have a normal immune system.
Everyday is a gift from God especially for Seth.
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http://www.sethbenjamin.org/ An Indiana baby needs life-saving surgery, but the state health care agency -- whose budget was slashed this year -- won't pay for it. Six-month-old Seth Petreikis suffers from complete DiGeorge syndrome, which keeps him from developing a thymus, an infection-fighting glandular organ. He needs a transplant that's been pioneered by a specialist at Duke University in North Carolina. But the procedure costs $500,000, and the state's Family Social Services Administration won't pay for it under the state's Medicaid, reports the Northwest Indiana Times. It claims that the treatment is "experimental" -- even though 58 of 60 children to receive it have survived.
We last wrote about Indiana's FSSA after some of its staffers told parents to drop off their developmentally disabled children at homeless shelters. The parents had failed to receive schedule Medicare waivers to pay for care, after Gov. Mitch Daniels -- who is now weighing a possible 2012 GOP presidential run -- cut the agency's funding to deal with a budget shortfall.
As we've reported, Arizona, suffering from its own budget crunch, has cut funding for certain medical transplants for people with diseases such as leukemia and hepatitis B.
Seth's parents have set up a fund for those who want to contribute to the cost of his treatment.
http://news.yahoo.com/s/yblog_thelookout/20101209/ts_yblog_thelookout/after-budget-cuts-indiana-baby-denied-life-saving-treatment Parents told to leave disabled kids at homeless shelters Parents in Indiana have reportedly been told by state workers to leave their severely disabled kids at homeless shelters if they can't afford to care for them, in what advocacy groups say is a horrifying example of how government budget cuts are hitting home for ordinary Americans.
Some parents testified at a state hearing this week that employees at the state Bureau of Developmental Disabilities Services gave them the harsh recommendation, according to the Associated Press.
The parents had sought guidance after they failed to receive scheduled Medicaid waivers that pay to support disabled children living independently. GOP Gov. Mitch Daniels has made cuts to the budget of the Family and Social Services Administration, of which the bureau is a part.
"We are people and they are people," Becky Holladay -- whose 22-year-old son has epilepsy, autism and attention deficit hyperactivity disorder -- told legislators Tuesday. "They have lives that are worth something."
The Family and Social Services Administration says that it's not the agency's policy to suggest homeless shelters as an alternative--and that workers who make any such recommendation will be disciplined. Spokesman Marcus Barlow told The Upshot that budget cuts had not led to delays in the Medicaid waivers. "People aren't waiting longer for their waivers than they were five years ago," he said.
Still, advocates for the disabled say the waiting list for waivers grew to 20,000 names last month--and that 2,000 slots were recently eliminated.
They also say that despite Barlow's assurances to the contrary, suggestions to leave disabled kids at homeless shelters have been widespread. "It is something we are hearing from all over the state, that families are being told this is an alternative for them," said Kim Dodson, an official with the Arc of Indiana. "A homeless shelter would never be able to serve these people."
Advocacy groups also say that the state social services agency isn't alone in floating homeless shelters as a care option.
Daunna Minnich says that as funding for her 18-year-old daughter's residential treatment neared exhaustion, the private firm Damar Services told Minnich that if she didn't take her daughter Sabrina home, Damar would dump Sabrina at a homeless shelter. Sabrina, who is bipolar, has attempted suicide and threatened her sister.
Damar executive Jim Dalton says his company would never leave a patient at a shelter and even has some residents whose funding has run out. But that's not sustainable, he said. "I don't think it's fair at all that a private service provider be where the buck stops — and that in many cases appears to be what is happening."
"We're talking about youth that absolutely require services," Dalton said. "And no one is willing to fund them anymore."
http://news.yahoo.com/s/yblog_upshot/20101028/us_yblog_upshot/parents-told-to-dump-disabled-kids-at-homeless-shelters
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