Monday, December 11, 2017

Epilepsy Surgery: Insurance Company Blocks Minimally Invasive Brain Surgery

Image result for laser ablation epilepsy
Laser ablation surgery burns otherwise inaccessible target areas to stop seizures. 
I have had a refractory patient cured by laser ablation for epilepsy. This is outrageous.
I fear that the notion of "experimental is often abused to block care". JR

Girl has blunt message for Aetna after her brain surgery request was denied




The author of the story has a family member with an uncontrolled seizure disorder who does not medically qualify for either type of brain surgery mentioned in the piece nor has the family member been denied care by an insurance provider.

(CNN)Cara Pressman sobbed in the big red chair in her living room. The 15-year-old tried to absorb the devastating news relayed by her parents: that their insurance company, Aetna, denied her for a minimally invasive brain surgery that could end the seizures that have haunted her since she was 9 years old.

"When my parents told me, I went kind of blank and started crying," she said. "I cried for like an hour."

Her friends had been lined up to visit her in the hospital for the surgery three days away, on Monday, October 23. Between tears, she texted them that the whole thing was off.

It was supposed to be a joyous weekend. Cara's grandparents had come to town to celebrate their 90th birthdays, a jubilant party with more than 100 family and friends crowding her home. The party did go on -- just with a lot more stress.

Cara had multiple complex partial seizures that weekend. When the seizures strike, her body gets cold and shakes, and she zones out for anywhere from 20 seconds to two minutes, typically still aware of her surroundings. Her seizures can be triggered by stress, by being happy, by exerting herself -- almost anything. "It's like having a nightmare but while you're awake," she said.
In the six weeks since the denial, Cara has had more than two dozen seizures affecting her everyday life....


MORE HERE from CNN

and MORE HERE

Friday, December 01, 2017

TEA selling Special Education IEP data? What is the connection between ISD and SPEDX?


Do parents have recourse? More to follow... JR



Texas Education Association 

Firing leaves Texas without a special education director at a critical time


Updated 5:56 pm, Wednesday, November 29, 2017



AUSTIN - After just over three months on the job, the state's special education director was fired last week after she filed a federal complaint against the Texas Education Agency for awarding a multi-million dollar, no-bid contract to a company that is mining data on disabled students......

A few months before she was hired, TEA signed a $2 million contract with SPEDx, a Georgia-based data company, to analyze students' Individualized Education Program, or IEP. An IEP lays out a student's disability, their education needs and how a school intends to meet those needs.
In a presentation to school districts, TEA said SPEDx will analyze IEPs to "detect hidden patterns and insights" that can help the department better serve students. In September, TEA amended SPEDx's contract to $4.4 million dollars. TEA says it did not put the contract out for bid because data project requires specialized software that only SPEDx can provide.