Some very interesting education-related news this week:
There were also some great blog posts/news articles about how the late Steve Jobs created technology that has really benefited children with disabilities, particularly the iPad. This one, by Tim Carmody in Wired, is the best.
Finally, hot off the presses, Governor Brown came through and signed SB 946 (Steinberg), which introduces a limited mandate for health insurers to pay for autism treatment — at least until the Federal health care bill is fully implemented in 2014. This is great for families who have been struggling to pay for autism treatment, or fighting with their insurance companies because autism treatment should already have been covered by California health insurance policies under AB 88, the state’s mental health parity law. It’s a big step forward and should provide the state budget with some relief, because schools and regional centers will no longer be the payers of last resort for autism treatment.
Autism Awareness Month kicked off Saturday, April 2, with World Autism Awareness Day. You’re going to be reading a lot about autism this month — for the first time it seems like media is really paying attention to autism and planning expanded coverage to coincide with the awareness campaign (popularized and sponsored by Autism Speaks).
I’ll be tweeting links as I find them (follow me @rpnorton). In the meantime, here are a few to start you off:
- Living With Autism – Parade Magazine, April 3, 2011: Two decades ago, parents, schools and clinicians began to notice that they were seeing many more young children diagnosed with autism and related disorders. Those children are now about to “age out” of the educational system, and face an uncertain future — there is a dearth of housing, employment and recreational programs to serve them and help them live independent and productive lives. Scary but worthwhile reading for parents of younger children.
- Best Places to Live for People With Autism – Fox News, April 1, 2011: OK, yeah, Fox News, but the story is based on an (unscientific) poll Autism Speaks did on cities with the best services and living environments for kids and adults on the spectrum. Interesting – L.A. made the list in California; generally California was ranked low for its services, a fact that will come as a surprise to no one who has attempted to navigate our Regional Centers and school districts.
- Pressing Employers for Autism Coverage, Wall Street Journal, March 6, 2011: Posted prior to Autism Awareness Month, this account is nonetheless an interesting update on what is happening in the fight to make health insurers cover more autism treatment. I’m intensely interested in this issue as 1)getting insurers to pay their fair share of autism treatment would lift some of the burden from school districts (currently behavioral treatment and even medically-based therapies like speech and occupational therapy are often ruled “educational” by insurers, thereby leaving the educational system as the payer of last resort for autism); and 2)I have recently started doing some consulting work for a company that advocates on behalf of providers and individuals for insurers to help pay for treatment. My personal view is that the cost of autism treatment should be equally shared between the special education system and the medical system, but we’re not there yet.
This is really important information for anyone (like me) who has fought for health insurance companies to provide broader coverage for autism treatment. This note is written by three moms who have done more than anyone I know to further this cause — they are leaders and if we ever get full insurance coverage for speech therapy, occupational therapy, floor time and behavioral therapy for autism in California, we will owe this victory to them! (Even if you aren’t involved in autism advocacy you should care about this – better treatment from insurance companies will save our schools from becoming the payers of last resort for autism treatment, and that benefits every student!) In short, if Karen, Kristin and Feda say to vote Dave Jones for California Insurance Commissioner – do it!
Dear Autism Advocate — The issue of medical insurance coverage for autism spectrum disorders by private health plans is of vital importance to many individuals and families throughout California. Although most attention and pending litigation has focused primarily on the Department of Managed Health Care (DMHC), the California Department of Insurance (CDI) is responsible for enforcing many of the insurance-related laws of the state. The CDI, which is the largest consumer protection agency in the state, is directed by the Insurance Commissioner. The Commissioner oversees more than 1,200 positions, a $200 million budget and regulates almost one-tenth of the California economy. Therefore, the position of Insurance Commissioner is of vital importance in the ongoing battle to ensure that private health plans provide appropriate medical coverage for individuals with ASD. On November 2 2010, Californians will be electing either Dave Jones or Mike Villines to this office. Recently several parent-advocates discussed the issue of autism medical coverage with Assembly Member Dave Jones. They summarized their meeting as follows:
“We met with Dave Jones this week. He was very intelligent and demonstrated that he was a quick learner. He was sympathetic and interested in the insurance issues facing the autism community. He was open to the idea of supporting an autism specific insurance mandate and wanted more information. He wants to make insurance run more smoothly for our population. He is committed to making lives better for our kids with autism and making insurance work for them. We were impressed that he has not accepted any money from the insurance companies. His opponent (Mike Villines) in contrast, has. If you are interested in more information, you can visit his website at http://www.davejones2010.com/”
Please forward widely to other interested individuals and groups.
Respectfully submitted by Dr. Karen Fessel, Kristin Jacobson, and Feda Almaliti
Tonight’s ABC News has a wonderful story to kick off Autism Awareness Month. Specilisterne (it means specialists) is a thriving Danish company that tests software–a click-by-click process so tedious it causes most testers to lose focus and make mistakes.
Thorkill Sonne, who founded Specilisterne in Copenhagen, believes that everyone does not have to fit in socially-accepted little boxes. He means to change the nature of that box completely. He is turning disability on its head, hiring his employees because of their ability. Sonne says workers with high-functioning autism have different brain wiring that gives them an edge.
Sonne told ABC News, “they have a good memory, they have very strong attention to details, they are persistent … within their area of motivation and they follow instructions.”
But Sonne has another motivation besides good business: he has a young son with autism, and hopes his successful example will create more opportunities for people with autism. Many of the employees at Specilisterne were unemployed for decades, because they were considered by most employers to be too out-of-sync socially and too distractible to be good workers.
Mads, another employee at Specilisterne, told ABC News he hadn’t been able to keep a job in 20 years before landing his current job. He told us, “Most of my colleagues are like me … we have in common to be weird.”
A chill went down my spine when I saw this headline – apparently the new National Survey of Children’s Health, last conducted in 2003, has now set the prevalence of autism spectrum disorders at 1 out of every 91 children (up to now the conventional prevalence statistic has been 1 in 150).
The study is published in the newest issue of Pediatrics, a respected peer-reviewed scientific journal, and is based on surveys of 78,000 parents on the health of their children by government researchers.
I don’t really question that the researchers found a much higher prevalence, but I do have questions about whether more cases are being identified on the milder side of the spectrum. I’m personally convinced there is more autism generally, but that at least some portion –maybe the biggest portion–of the increase is due to a broader definition of what constitutes an autism spectrum disorder. For example, many adults who today say they have Asperger’s Disorder would not have been diagnosed as having autism when they were children.
I haven’t had a chance to read the full journal article but will weigh back in on this when I do.
I love this! USA Today has a story on a new app for the iPhone or iPod Touch that can be used to help people with communication disorders — like some non-verbal children with autism — communicate with others:
JW [a boy with autism] goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, “I want Grandma’s cookies” or “I’m angry — here’s why.” He uses his “talker” to communicate with everyone — including his service dog, Roscoe, who listens to voice commands through the tiny speakers.
Read the full article >>>
Over the weekend I had the privilege of seeing Carolyn Doyle’s “Confessions of a Refrigerator Mother” at the Marsh Theater in San Francisco. Ms. Doyle’s 70-minute monologue is about her family life, particularly life with 9-year-old Joaquin, who is severely autistic. (“Refrigerator mother” is a reference to a now-discredited theory by Leo Kanner, the psychiatrist who first identified autism. Kanner believed that autism might be caused by a lack of warmth or affection shown by mothers towards their babies).
Ms. Doyle’s show is funny, unbearably sad, and overall, a very true picture of a family coping with autism. Bravo!
Taking a break from election results . . .
Tonight ABC-7 has a very interesting story featuring my good friend Feda Almaliti, who successfully took on her insurance company to pay for treatment for her son with severe autism. Kaiser told Feda that her son’s issues were purely educational, and told her to go to her local school district to get them to provide the intensive behavioral treatment he needs.
After several frustrating years and lots of hard work, Feda won an independent medical review of her son’s case and was awarded comprehensive behavioral treatment at Kaiser’s expense. While her case does not set a legal precedent, I think it exposes a huge issue in special education and a real opportunity for school districts to join with parents to argue that health insurance companies should pay their fair share of the sometimes very high cost of treating autism spectrum disorders–which are both medical and educational in nature. It’s almost laughable (if it didn’t make me want to scream) to hear a Kaiser executive say in Part II of the piece that “schools have traditionally said they are responsible for these kinds of interventions.” Oh, really? That would be news to the California School Boards Association. (It’s also interesting to listen to the raw interview with Sharon Levine, the Associate Director of Kaiser Permanente.)