SchaferAutismReport: Military Parents Battle the System to Help Their Autistic Children

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schafer wrote: Monday, December 22, 2008p Reader Supported In This Issue: • • • • • • • • • CAREMilitary Parents Battle the System to Help Their Autistic Children Care Challenges Grow In SeverityRESEARCHCan Children with Autism Recover? If So,

How?PEOPLEDelaware Father Sought For Felony KidnappingDaughter's Autism Gives Alabama Lawmaker A CauseMissing Tuckahoe Man Found in NYC; Back HomePUBLIC HEALTHMore than 54 Million Disabled in U.S., Census SaysFDA Will Continue To Study ChemicalEDUCATIONMore Autistic Students Integrating into Traditional Classrooms Send your LETTER The Autism Calendar or here: tinyurl.com/283dpa DO SOMETHING ABOUT AUTISM NOW . . . Read, then Forward the Schafer Autism Report.$35 for 1 year - 200 issues, or No Cost www.sarnet.org Hundreds of Local Autism Events Political Discussion Forum Heats Up As Vaccine Link To Autism Question SpreadsAn email discussion list has been created in response to the growing interest in the environmental causes of autism -- now 2,300 subscribers. Here is where to join: (Sponsored by the Schafer Autism Report) SAR Back Issues AUTISM IS TREATABLE Check here Today's SAR is provided through the support of paid subscription readers. - THANK YOU - DEADLINEWednesday - December 24 For January 2009Autism Events CalendarSubmit listing here free! CAREMilitary Parents Battle the System to Help Their Autistic ChildrenUnmet treatment needs add to family strains from transfers and war-zone deployments By for usnews.com. is.gd/cPSO Driscoll might seem the unlikeliest of lobbyists to cruise the halls of Congress. Indeed, the Marine Corps wife and mother with three young children, one of whom has autism, didn't envision herself hustling down the marbled corridors in a power suit. Yet, on a recent fall day, Driscoll is maneuvering her way like a K Street pro, eager for any opportunity to make her case that the Pentagon's healthcare system is failing active-duty military families with

autistic children, families like her own. And there are many of them. By the Pentagon's own data, some 13,243 of the estimated 1.2 million children of active-duty military personnel have been diagnosed with autism spectrum disorder. Only 1,374, though, are qualified to receive treatment under the extended care arm of the federal healthcare program TRICARE. A congressionally mandated hybrid of both military and civilian medical services, TRICARE is the military's healthcare program for active-duty service members, retirees, and their families. The cause of autism, which strikes about 1 in 150 children nationwide, remains a mystery. And for reasons that aren't clear, autism is diagnosed in military children at roughly double the rate it is in the civilian world, a striking 1 out of 88, according to Defense Department data.Pressure. By

themselves, the numbers tell only part of the story. Driscoll has become the chronicler of heartbreak and knows that, for each family, there is the challenge of doing what is best to help the child through what is often a long-term and costly program of intensive behavioral treatment. Layered on top of that are near-constant wartime deployments that strip households of a parent for extended periods. The hardships for military families are compounded by the realities of frequent moves that disrupt or end altogether treatment programs such as applied behavior analysis therapy, or ABA, which medical experts say makes a huge difference in the lives of autistic children. The skyrocketing out-of-pocket payments for expenses not covered by TRICARE are forcing some service members to consider volunteering for additional combat deployments, which come with tax-free danger pay, to help dig their families out of debt. And the financial pressures are prompting some to leave the

military, a development that officials warn is harming military capabilities. Driscoll has gone to the Hill to battle on behalf of her own autistic son, 10-year-old , and others like him, arguing that military healthcare has left families stranded. On this, she can speak with authority. For the past four years, she has put in countless hours, drawn on income and home equity, and taken on thousands in debt annually to get her child the medically prescribed therapy not covered by the military's healthcare program. "The majority of families who face the circumstance of having to pay out of pocket for therapy are simply going without. That should never be the answer for military children," says Driscoll. "This is a devastating medical condition that is treatable, and children can make significant gains.” Autism is a developmental brain disorder that can rob children of their speech or even the ability to

look their parents in the eye. And because there is no cure--only intensive therapy aimed at minimizing the impairment--it is considered a chronic disorder, as persistent and deeply rooted in one's health blueprint as arthritis or high blood pressure. Yet, according to the Defense Department's own data, 90 percent of military children diagnosed with autism are not receiving ABA therapy treatment. It's not from lack of trying, military families say, criticizing the TRICARE system for its classification of intensive therapy as education rather than a medical necessity. This rationale, they say, allows the healthcare provider to justify what families regard as an arbitrary cap for ABA treatment services. This is not an issue limited to military families, with some states reviewing the rules for private-sector insurers. Seven states have enacted legislation mandating autism coverage from private-sector insurers, and similar bills are pending

or anticipated in more than 20 states. But these measures would not directly affect TRICARE because it is a federal program. "Do we really want to have a system where a kid living in one state may get a better quality of care than a kid living in another state?" asks Stuart Spielman, senior policy adviser for Autism Speaks, the nation's largest autism advocacy organization, based in Washington, D.C. "Think about the extraordinary sacrifices that military families make," he says. "If we're asking someone to risk his or her life in Iraq or Afghanistan, do we not have an obligation to help their families?” Driscoll knows therapy works. When her son was just a little over a year old, he began throwing frequent tantrums. Sensitive to light and noise, he would hit himself in the face and bang his head on his crib. He would not speak. "This was my first child, so I wasn't sure what to expect," she says. More than eight years later, as his

mother tells the story one Sunday afternoon at the dining room table in their suburban Northern Virginia home, , now a chatty and personable boy, sits in the den watching a movie with the shades drawn and the lights turned off. When he began ABA therapy at age 3, he could barely speak, she recalls. Now, he's able to talk, have relationships with his siblings and other kids at school, and be included in a general classroom, she says, breaking into a smile. His need for intensive therapy has waned with each improvement. While the hours fluctuate, what was once upwards of 20 hours a week is now closer to 10. "I look at periods of time that are dark and ugly," she says, recalling the intense stress she first felt dealing with her son's condition. "It's that grieving period when you give your life up and your expectations for your child's life--that for me was a dark period.” Marine Corps Master Sgt. Buck Doyle and his For rest of today's SAR click here:www.sarnet.org/frm/forsar.htm Today's SAR is provided through the support of paid subscription readers. - THANK YOU - $35 for 1 year - or free!www.sarnet.org Copyright Notice: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each

item. Lenny Schafer editor@... The Schafer Autism Report is a non-profit corporation Vol. 12 No. 178p

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