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Tuesday, 03 July 2012 22:01

Senate Bill 946

California is officially the 28th state to enact autism insurance reform by signing SB.946, which requires coverage of proven behavioral treatment therapies starting in July 2012.

"Courage and common sense have prevailed as Governor Brown has chosen to side with California families and taxpayers, rather than the health insurance lobby," said Autism Speaks Co-founder Bob Wright. "Autism Speaks singles out Senate President Pro Tem Darrell Steinberg whose unwavering leadership and commitment led to this success."

Authored by Senator Steinberg, SB.946 clarifies settlements negotiated by the Brown administration last summer with two major health plans that behavioral health treatments, such as applied behavior analysis (ABA), are eligible benefits with no caps on age or amount of benefits. The settlements initially appeared to provide the needed coverage, but contained a flaw that substantially negated their intended impact, requiring the legislative remedy provided through SB. 946.

The law began taking effect July 1, 2012, as health plans renew policies and sunset in 2014. By virtue of the early intervention provided through ABA, California taxpayers are expected to save $140 million a year in special education and social service costs, according to an independent analysis by the California Health Benefits Review Program. In addition, the improved access to ABA therapy could create at least 20,000 new jobs.

"This is a victory for the thousands of California families who have had to pay out-of-pocket costs for autism treatment considered medically necessary," said Steinberg. "I commend the Governor for signing SB. 946 and adding California to the long list of states mandating that health plans pay their fair share. This day would have never happened if it were not for the countless families and advocates who have been working tirelessly on this issue for many years. Our work is not done. As soon as our economy improves I will work to ensure every child, every young adult, and every family in California has affordable access to this therapy."

The new law explicitly preserves the obligation of health plans and insurers to provide services under California's existing mental health parity law, through which many families have been able to secure coverage for other treatments such as occupational therapy, speech therapy, physical therapy, and treatment of co-morbid physical health issues.

Thousands of California families, in the absence of insurance coverage, have been forced to pay out-of-pocket or rely on taxpayer-funded programs for behavioral health treatments, which can cost $50,000 a year or more. Autism Speaks has helped lead the fight in statehouses across the nation to end such insurance company discrimination. This year alone, laws have been enacted in Arkansas, Virginia, West Virginia and Rhode Island; and a bill passed this summer by the New York Legislature awaits Gov. Andrew Cuomo's signature.

Since 2006, the prevalence of autism has risen to 1 in 110, including 1 in 70 boys, prompting the national Centers for Disease Control and Prevention to call autism a public health challenge. Estimates of the annual cost of autism to the nation have ranged as high as $90 billion. The number of California children with autism has not been calculated precisely, but estimates range at 30,000 children.

"The use of early intervention treatments, such as ABA, can substantially increase a child's independence, thereby reducing future taxpayer costs for special education and social services," said Peter Bell, Autism Speaks' executive vice president for programs and services. "In states that have enacted autism insurance reform, actual experience has demonstrated the impact on premiums has been far below estimates offered by insurance industry lobbyists."

Courtesy of Autism Votes.

Published in do-gooding
Thursday, 31 May 2012 17:37

Prom at the Packard Children's Hospital

More than 125 young patients and their guests are eagerly anticipating the longest-standing children's hospital prom in the Bay Area.

The Mysteries of the Deep theme begins this Friday night (June 1, 2012) at Lucile Packard Children's Hospital at Stanford, where hospital schoolteachers from the Palo Alto Unified School District are putting the final touches on this year's very special evening. Beyond providing an end-of-school rite of passage, the eighth annual prom offers a rare chance for teens and other patients, many of whom have life-threatening illnesses, to immerse themselves in an age-old, non-hospital experience—this year full of aquatic adventures and treasures.

"It's so important for these kids—some of whom will never go to their school prom—to have a night where they can forget they're in a hospital and just be kids," said teacher Kathy Ho, who leads the coordination of an event that gets bigger and more imaginative every year.

Mysteries of the Deep offers a transformative experience from the moment guests step into the hospital elevator—decked out entirely as an underwater submarine—and descend deep, deep down to the Ground Floor. The school captains have it all charted out. Emerging into a kelp forest, kids will admire schools of fish, jellyfish, and other sea life suspended from the ceiling as they pass through a coral reef and enter prom.

More than 100 volunteers and local businesses have worked tirelessly for months to make this night possible, including DreamWorks (providing much of the art design and decoration), Anthropologie, Selix Formal Wear, Symantec, Genentech, Weir Catering, Feet First Entertainment, Sugar Shack and many more. Because of their generosity, kids will enjoy shaking their fins to tunes spun by a live DJ, diving into delicious catches of the day, throwing their bait out on the casino table, and exploring underwater adventure games including Poseidon's Pearl, Shark Attack, and Tic Tac Tuna.

Anyone attending the hospital school over the past year is invited to bring a guest, including brothers and sisters who relocated to the area while their sibling received care. Even past-year prom goers are hooked, some flying in from as far as Hawaii and Arizona.

"It's amazing how many of our former patients and students are coming back to the hospital to volunteer at prom," marveled Kathy. "The older teens are making plans with the younger students, encircling them with a sense of community, and creating a haven for the sickest of kids. That's what it's all about."

Read more about Lucile Packard Children's Hospital at Stanford here.

Published in social
Saturday, 11 February 2012 08:10

Get the balance right

Get the Balance Right

How do you do it?

How do you make sure to keep equal time with each child?  The one who has special needs and the one(s) that do not?

The reason why I ask is because a friend of MJ’s asked her to include pictures of Brady on her Facebook page because they wanted to see how Brady was doing as well.  It got me thinking that do I overload my time focusing on Carly and limit the amount of time I spend with Brady and Emma (when she is out on a visit).

If so, how do I balance it out?

Do Emma and Brady notice?

Would Carly notice if my time was divided equally?

I assume that these are thoughts that bounce around every parents head, regardless if their child is special needs or not.

So, how do you do it?

How do you get the balance right?

Published in everyday life
Wednesday, 07 September 2011 05:26

Just a Small Rant...

...About Prenatal Testing and Eliminating Imperfection

Not everything can be detected in an AFP, a CVS, an ultrasound or an amniocentesis. As far as I know, those tests will not determine if your child will have mental illness, heart disease, obesity, cancer, diabetes, Parkinson's, Alzheimer's, autism and the list goes on. Or do we have tests for these things in the works? Shudder...Those tests can't tell you if your child will be happy or a contributing member to society. They can't tell you if your child will grow up to be a criminal, a serial killer, a child molester or a rapist. They can't tell you if your child will grow up to be bully or a thief. They can't tell you if your child will have motivation or drive or end up being homeless. These tests won't tell you if your child will stand out, or be homosexual, or have a learning disability or be an outcast because he or she is too tall, too short, too skinny, too fat, too pretty, too ugly, too blond, too dark or too anything. I certainly know that the prenatal tests will never tell you if your child will be in a car accident or a near drowning or take a bad fall or have a birth trauma. There is NO SUCH THING as a perfect child and having those tests to rule out the forbidden DOWN SYNDROME or any other detectable birth "defect" doesn't guarantee that you will have that unattainable picture perfect human being. I'm sensitive now, more than ever, to this obsession over early detection for the purposes of eliminating "imperfect" unborn children. There is a push to eliminate children like Joaquin and Sofia. I wish people would understand that "disability" is actually very natural and it's everywhere. People come in all shapes and forms and abilities. I find it impossible to find anyone in the world that doesn't suffer from some sort of challenge or "disability". Wear glasses? Ever had braces? On a diet? Have a bad back? Ever need surgery? Need coffee in the morning? Ever had a headache? Ever need help with anything? Would you say you are perfect? Would you say you are totally healthy? My bet is each and everyone of us has some challenge or special need that they deal with regularly.

I guess this is my way of saying (and this is ONLY MY OPINION) that I don't think anyone should enter parenthood unless they understand that you take on ALL SORTS of risks, trials and tribulations, heartaches, and disappointments when it comes to having a child and you are signing up for the JOURNEY. Wherever it may take you. It's a huge responsibility. And it's a privilege.  So if you aren't up for the challenge, don't have a child. To the medical industry: Let's get off this slippery slope of prenatal testing. Let's be mindful of the direction we are headed. Let's not pretend the testing is to have more "information" or to "prepare". If that were the case, I wouldn't be ranting right now. The abortion rate after a prenatal diagnosis of Down syndrome is staggering. 92% of babies who are prenatally diagnosed with Down syndrome are eliminated. That sentence alone says it all.

OK...rant is over.

On to something inspiring, amazing and beautiful. Thank goodness for that.

A link to a beautiful video:

Wonderful Works

A link to the beautiful new ministry launched this month:

Wonderful Works

Published in health
Friday, 24 June 2011 00:00

Sex Ed + Special Needs

"The assumption that all disabilities somehow affect the ability and desire to have sex is common ... People with disabilities are rarely exposed to sex education..." writes Winstone Zulu in an opinion piece titled "I Had Polio. I Also Have Sex." recently published in The New York Times.

Winstone, who had polio and is H.I.V. positive, explains that many people are often shocked or confused when he tells them that he contacted H.I.V. sexually. Winstone's anecdote points to a bigger issue: people with special needs are typically not acknowledged as sexual beings. In fact, sexual education classes in schools sometimes overlook special needs students.

Dandelion recently addressed this lack and importance of sex ed in the special needs community an article called "Birds, Bees & Special Needs." According to our article, as many as 90 percent of people with developmental disabilities are sexually abused sometime in their lives.

One of the most urgent reasons to talk about sex with our children is to give them the information and tools they need to protect themselves.

Yes, it's a difficult conversation – and can be uncomfortable for any parent of any child. But the birds-and-bees conversation is no less important when your child has special needs – in fact, it may be even more so. Children with special needs grow into adults with special needs, who have urges and operating body parts just like their typically developed peers. They deserve to know what's going on with their bodies, they deserve to be told what's appropriate and what's not (or, even illegal in some cases...), they deserve to be informed just like their peer, and they deserve the health care services that relate to sexual health.

So, have you had "the talk" yet? Are you planning to? Share your thoughts!

Published in health
Tuesday, 31 May 2011 18:09

The Medical Term Is Craniopagus

Could conjoined twins share a mind? This question is posed in a recent article in The New York Times Magazine.

Four-year-old Krista and Tatiana Hogan are twins who are joined at the head, referred to medically as craniopagus. Twins conjoined this way are one in 2.5 million. But what makes the Hogan twins even more unique is the way their brains may possibly connect. While each girl has her own unique brain, brain images suggest that the girls share a thalamus, part of the brain that filters sensory input and consciousness.

"Because the thalamus functions as a relay station, the girls’ doctors believe it is entirely possible that the sensory input that one girl receives could somehow cross that bridge into the brain of the other. One girl drinks, another girl feels it," the article explains. The girls even seem capable of somehow "seeing" what the other does -- when a red crayon is placed in front of Tatiana (where her sister cannot see), Krista correctly identifies the color.

Published in do-gooding
Dandelion is a free quarterly magazine that serves as a resource for Bay Area and Sacramento families of children with special needs: autism and Asperger’s, cerebral palsy, Down syndrome, those who are blind, deaf, in wheelchairs, learning disorders, sensory issues and every special need in between. Dandelion’s mission is to create and empower a community of local families through a variety of media by providing a database of resources, trusted and thought-provoking editorial content, an up-to-date calendar of special needs-specific events, noteworthy news, as well as contributions to the community.