Imagine this. Your child has suddenly stopped talking. You have talked to your doctor who has told you to get him to a speech therapist for an assessment IMMEDIATELY. You are panicked because you have no idea what has happened. You call your health insurance carrier customer service line. You tell the representative, that your child has stopped talking and you need a referral to a speech therapist. The representative says "What's his diagnosis?". You say "I don't know he stopped talking". The representative says "I cannot do a referral without a diagnosis mam". You say, "I don't have a diagnosis, it has been suggested that I also get an assessment for autism", you break out into tears. The representative says "Oh, autism? Please hold". You wait, feeling; scared, shaking, angry, frustrated, hopeful. The representative returns to the line after 3 minutes and says "I'm sorry we don't cover speech for autism". You cry and yell "What do you mean, my son has stopped talking. He can't talk. He needs help,what do you mean you can't help?!"
With what seems like total indifference the insurance representative calmly and briefly replies "Sorry mam. Is there anything else I can help you with today?".
This is when my battle with medical insurance began. I could not believe that they were unwilling to help us, but they were. Nine years later progress is being made, slowly. Some states have passed laws requiring insurance company's to cover medically necessary treatments for people with Autism, others including CA are still in the battle. Today CA took one step closer to forcing the insurance company's to provide medically necessary coverage and it made the Los Angeles Times.
Here is an excerpt from the article that sums it up for me!
Consumer Watchdog President Jamie Court said the ruling was reason enough for Gov. Arnold Schwarzenegger to order the department to stop fighting the suit and start ordering insurers to provide the treatment to their autistic members.
"For an administration that is so involved with the Special Olympics to not understand the harm it's causing every day that an autistic child doesn't get the care they need is not only legally inexcusable but morally reprehensible," Court said.
Ruling deals a blow to denials of autism treatment -- latimes.com
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Tuesday, October 27, 2009
Monday, October 5, 2009
8-year-olds with autism up 50% in 2 years
latimes.com
October 5, 2009
Reporting from Chicago
About 1 in 100 of America's 8-year-olds have been diagnosed with autism spectrum disorder, according to U.S. Centers for Disease Control and Prevention researchers, who will be releasing details of their study later this year.
That's a 50% increase from two years ago, when the government estimated the rate at 1 in 150.
Dr. Ileana Arias, deputy director of the CDC, said the agency considers the disorder "a significant issue that needs immediate attention."
But the higher rate might not mean more kids have autism spectrum disorder, scientists cautioned.
"It is not clear more children are affected rather than just changes in our ability to detect," said Dr. Tom Insel, director of the National Institute of Mental Health.
The rate, calculated by reviewing records in communities across the U.S., echoes findings of a national telephone survey of parents that is being published today in the journal Pediatrics.
The survey, conducted by the CDC and the Health Resources and Services Administration, asked parents of 78,000 children ages 3 to 17 whether healthcare workers or doctors had ever told them that their children had autism spectrum disorder.
Parents of 1 in 91 children said yes, and said their children currently have the disorder. For boys, the figure was 1 in 58.
Dr. Steven Goodman, an epidemiologist with Johns Hopkins Bloomberg School of Public Health, said he agrees that the prevalence is higher than years ago and that it merits concern. But he warned against panic.
"This has the tremendous potential to scare people," Goodman said. "It is very unlikely that there has been an explosive increase in the way that has been portrayed in the media."
No one knows what causes autism or how to cure it. Scientists think it may be many distinct problems that manifest themselves similarly. Afflicted children often have trouble communicating and socializing, and they can exhibit repetitive, rigid behavior.
Diagnosing autism relies on observation, behavioral checklists and expert assessment rather than lab tests or X-rays, making it hard to determine how common it is.
Interpreting data can be tough too. Growing awareness, wider screening and a push to identify the disorder earlier accompany the rise in the rate, but scientists have not figured out whether other factors are also at play.
Advocates in the autism community called for more funding for research and for family services.
"We have this amazing, terrible national health crisis on our hands at this moment," said Lee Grossman, president of the Autism Society, based in Maryland. "We have millions of people affected by this, and the services and supports available to them are inappropriate and inadequate and in some cases a detriment."
ttsouderos@tribune.com
October 5, 2009
Reporting from Chicago
About 1 in 100 of America's 8-year-olds have been diagnosed with autism spectrum disorder, according to U.S. Centers for Disease Control and Prevention researchers, who will be releasing details of their study later this year.
That's a 50% increase from two years ago, when the government estimated the rate at 1 in 150.
Dr. Ileana Arias, deputy director of the CDC, said the agency considers the disorder "a significant issue that needs immediate attention."
But the higher rate might not mean more kids have autism spectrum disorder, scientists cautioned.
"It is not clear more children are affected rather than just changes in our ability to detect," said Dr. Tom Insel, director of the National Institute of Mental Health.
The rate, calculated by reviewing records in communities across the U.S., echoes findings of a national telephone survey of parents that is being published today in the journal Pediatrics.
The survey, conducted by the CDC and the Health Resources and Services Administration, asked parents of 78,000 children ages 3 to 17 whether healthcare workers or doctors had ever told them that their children had autism spectrum disorder.
Parents of 1 in 91 children said yes, and said their children currently have the disorder. For boys, the figure was 1 in 58.
Dr. Steven Goodman, an epidemiologist with Johns Hopkins Bloomberg School of Public Health, said he agrees that the prevalence is higher than years ago and that it merits concern. But he warned against panic.
"This has the tremendous potential to scare people," Goodman said. "It is very unlikely that there has been an explosive increase in the way that has been portrayed in the media."
No one knows what causes autism or how to cure it. Scientists think it may be many distinct problems that manifest themselves similarly. Afflicted children often have trouble communicating and socializing, and they can exhibit repetitive, rigid behavior.
Diagnosing autism relies on observation, behavioral checklists and expert assessment rather than lab tests or X-rays, making it hard to determine how common it is.
Interpreting data can be tough too. Growing awareness, wider screening and a push to identify the disorder earlier accompany the rise in the rate, but scientists have not figured out whether other factors are also at play.
Advocates in the autism community called for more funding for research and for family services.
"We have this amazing, terrible national health crisis on our hands at this moment," said Lee Grossman, president of the Autism Society, based in Maryland. "We have millions of people affected by this, and the services and supports available to them are inappropriate and inadequate and in some cases a detriment."
ttsouderos@tribune.com
The CDC Get's Real
More Kids Have Autism Than Thought
By CARLA K. JOHNSON
CHICAGO (Oct. 5) - Two new government studies indicate about 1 in 100 children have autism disorders — higher than a previous U.S. estimate of 1 in 150.
Greater awareness, broader definitions and spotting autism in younger children may explain some of the increase, federal health officials said. "The concern here is that buried in these numbers is a true increase," said Dr. Thomas Insel, director of the National Institute of Mental Health. "We're going to have to think very hard about what we're going to do for the 1 in 100." Figuring out how many children have autism is extremely difficult because diagnosis is based on a child's behavior, said Dr. Susan E. Levy of the Children's Hospital of Philadelphia and a member of the American Academy of Pediatrics subcommittee on autism. "With diabetes you can get a blood test," said Levy. "As of yet, there's no consistent biologic marker we can use to make the diagnosis of autism." The new estimate would mean about 673,000 American children have autism. Previous estimates put the number at about 560,000. One of the studies stems from the 2007 National Survey of Children's Health. The results were released Monday, and published in October's Pediatrics.
In that study, based on telephone surveys, parents reported about 1 in 91 children, ages 3 to 17, had autism, including milder forms such as Asperger's syndrome.
The other government estimate has not been formally released yet. But because of the new published findings, officials from the Centers for Disease Control and Prevention decided to announce Friday during an embargoed press briefing that their preliminary findings also show about 1 in 100 children have the disorders.
The CDC uses an in-depth method for its estimate, said CDC researcher Catherine Rice. An agency network reviews the education and health records of 8-year-old children in selected cities and determines whether the children meet the diagnosis. Autism experts generally consider this method more rigorous than a telephone survey.
President Barack Obama has made autism a priority for research, Insel said. Federal stimulus money has been earmarked for autism, and a 2006 law pumped millions of dollars of new federal money into autism research, screening and treatment.
The published findings, which include state-level data, will help the government plan new services, said Michael Kogan, a researcher with the federal Health Resources and Services Administration, who led the new study, which lists authors from several government agencies, including CDC.
The findings are based on the results of a national telephone survey of more than 78,000 parents of children ages 3 to 17. The survey dealt with many health issues and included two questions on autism.
Parents were asked whether they'd ever been told by a doctor or other health care provider that their child had autism, Asperger's syndrome, pervasive developmental disorder or other autism spectrum disorder.
If the parent said yes, they were asked if their child currently has autism or an autism spectrum disorder. "Yes" to both questions was counted as a child with an autism disorder.
The survey questions were flawed, said autism researcher Irva Hertz-Picciotto of the University of California, Davis. A broad definition, read to some parents who asked for clarification, didn't include "repetitive behaviors," Hertz-Picciotto said. And parents weren't asked about a professional diagnosis in the second question.
Children with autism can have trouble communicating and interacting socially. They may have poor eye contact and engage in repetitive behavior such as rocking or hand-flapping.
"The wording and definition invited much broader interpretation," Hertz-Picciotto said, and researchers didn't check what parents said against medical records.
In another finding, nearly 40 percent of the children ever diagnosed with autism disorders didn't currently have autism, the parents reported. That rate is much higher than ever found by autism recovery researchers. Outside experts said they doubt it reflects a true rate of recoveries. Autism could have been suspected and later ruled out for some of the children, the authors wrote.
One of the new study's authors was supported in part by a grant from Autism Speaks. The others work for federal agencies.
"Autism is a highly prevalent disorder," said Geraldine Dawson, chief science officer of the advocacy group Autism Speaks. "We're looking at a major public health challenge."
By CARLA K. JOHNSON
CHICAGO (Oct. 5) - Two new government studies indicate about 1 in 100 children have autism disorders — higher than a previous U.S. estimate of 1 in 150.
Greater awareness, broader definitions and spotting autism in younger children may explain some of the increase, federal health officials said. "The concern here is that buried in these numbers is a true increase," said Dr. Thomas Insel, director of the National Institute of Mental Health. "We're going to have to think very hard about what we're going to do for the 1 in 100." Figuring out how many children have autism is extremely difficult because diagnosis is based on a child's behavior, said Dr. Susan E. Levy of the Children's Hospital of Philadelphia and a member of the American Academy of Pediatrics subcommittee on autism. "With diabetes you can get a blood test," said Levy. "As of yet, there's no consistent biologic marker we can use to make the diagnosis of autism." The new estimate would mean about 673,000 American children have autism. Previous estimates put the number at about 560,000. One of the studies stems from the 2007 National Survey of Children's Health. The results were released Monday, and published in October's Pediatrics.
In that study, based on telephone surveys, parents reported about 1 in 91 children, ages 3 to 17, had autism, including milder forms such as Asperger's syndrome.
The other government estimate has not been formally released yet. But because of the new published findings, officials from the Centers for Disease Control and Prevention decided to announce Friday during an embargoed press briefing that their preliminary findings also show about 1 in 100 children have the disorders.
The CDC uses an in-depth method for its estimate, said CDC researcher Catherine Rice. An agency network reviews the education and health records of 8-year-old children in selected cities and determines whether the children meet the diagnosis. Autism experts generally consider this method more rigorous than a telephone survey.
President Barack Obama has made autism a priority for research, Insel said. Federal stimulus money has been earmarked for autism, and a 2006 law pumped millions of dollars of new federal money into autism research, screening and treatment.
The published findings, which include state-level data, will help the government plan new services, said Michael Kogan, a researcher with the federal Health Resources and Services Administration, who led the new study, which lists authors from several government agencies, including CDC.
The findings are based on the results of a national telephone survey of more than 78,000 parents of children ages 3 to 17. The survey dealt with many health issues and included two questions on autism.
Parents were asked whether they'd ever been told by a doctor or other health care provider that their child had autism, Asperger's syndrome, pervasive developmental disorder or other autism spectrum disorder.
If the parent said yes, they were asked if their child currently has autism or an autism spectrum disorder. "Yes" to both questions was counted as a child with an autism disorder.
The survey questions were flawed, said autism researcher Irva Hertz-Picciotto of the University of California, Davis. A broad definition, read to some parents who asked for clarification, didn't include "repetitive behaviors," Hertz-Picciotto said. And parents weren't asked about a professional diagnosis in the second question.
Children with autism can have trouble communicating and interacting socially. They may have poor eye contact and engage in repetitive behavior such as rocking or hand-flapping.
"The wording and definition invited much broader interpretation," Hertz-Picciotto said, and researchers didn't check what parents said against medical records.
In another finding, nearly 40 percent of the children ever diagnosed with autism disorders didn't currently have autism, the parents reported. That rate is much higher than ever found by autism recovery researchers. Outside experts said they doubt it reflects a true rate of recoveries. Autism could have been suspected and later ruled out for some of the children, the authors wrote.
One of the new study's authors was supported in part by a grant from Autism Speaks. The others work for federal agencies.
"Autism is a highly prevalent disorder," said Geraldine Dawson, chief science officer of the advocacy group Autism Speaks. "We're looking at a major public health challenge."
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