10 Myths about Autism Insurance in Massachusetts

Top 10 Myths About Autism Insurance in Massachusetts

Myth 1: MA has universal healthcare. Not if you are a person with autism. MA health plans don’t cover autism, the largest public health threat to children and a more common diagnosis for kids than cancer, diabetes and AIDS combined. There are no other common medical conditions for which doctors prescribe standard treatments, and MA private health insurers refuse to cover them. 21 other states that don’t claim to have universal health care have already passed autism insurance reform.

Myth 2: Schools are handling autism. No, schools know how to provide education, not healthcare. The idea that we should give them the primary responsibility for treating medical problems is ridiculous. Would you allow your child to get her asthma or diabetes or eye care from school staff? Public schools do provide some autism therapy because federal law requires it, but that requirement is limited it to what is necessary to enable children to “access the curriculum”. The notion that school-day assistance is all these kids need for a disability that plagues them 24 hrs/day is absurd. It can only be compared to taking a child’s glasses away from her when she walks out of school, or making an asthmatic child leave his inhaler in his locker. Schools rely upon the health care system to send kids to school prepared to learn, which is why school superintendents strongly support autism insurance reform. If kids with autism are arriving at school without proper health care provided to them, ALL children, including typical kids, suffer.

Myth 3: The Mental Health Parity Bill covers autism. No. The Mental Health Parity Bill doesn’t cover the four most important therapies for effective autism treatment: Speech, Occupational, Physical, and Applied Behavioral Analysis (ABA) Therapy. These 4 therapies are explicitly named in H3809: Act to Require Insurance Coverage for Autism (ARICA).

Myth 4: The Federal Health Insurance Reform covers autism. No. While some individual and small group plans are required to cover behavioral therapy, the vast majority of plans, the large employer and self-insured plans which cover the majority of Americans, don’t cover autism. ( i )

Myth 5: Autism coverage is expensive. No it’s not. According to the Harvard School of Public Health, the lifetime cost to taxpayers of caring for an individual with autism is $3.2M.( ii ) Providing intense services early on will seriously diminish these costs, and will result not only in savings in SSI, Medicaid, Medicare, and other state funded programs, but will increase state income tax revenue from individuals with autism who, if effectively treated, will work and pay taxes. On the other hand, this bill will cost just from $1.22 to $2.45 per member/per month (DHFP) ( iii ). What’s expensive is not acting on this bill.

Myth 6: These autism therapies are unproven. For the health plans to continue to state this is simply dishonest. They particularly target ABA Therapy, and just for the record: 550 studies have been published in scientific journals supporting it ( iv ); the US Surgeon General names it as a key therapy for autism ( v ), and the study that just came out from the MA Division of Health Care Finance and Policy re-affirms that this therapy is effective ( vi ), as do 21 other states.

Myth 7: MA is a progressive state. Wrong. Very “un-progressive” states like South Carolina, Louisiana, and Texas have already passed this reform. We live in a state with a collective moral conscience that cannot bear to have greyhound dogs race around a track, but we continue to allow children with autism to go without healthcare that can radically improve their lives.

Myth 8: "Mandates" are responsible for driving health care costs increases. No. The extreme inflation of health care costs in Massachusetts are driven by many factors, some of which have been the subject of Attorney General Investigations and Boston Globe articles . Multiple actuarial analyses have concluded that the cost of ARICA is minimal ( vii ). The experience in States that already require insurance coverage for autism treatment has reflected a negligible impact. The larger debates about our State and our Nation’s health care system should not be an excuse to continue to deny healthcare to kids with autism.

Myth 9: Autism families are a private interest group. When a healthcare crisis is this rampant it affects everyone: taxpayers, employers, employees, typical kids, kids with autism… everyone in some way. And if you don’t have a personal connection yet, you soon will, given that 1/110 kids, and 1/70 boys are being diagnosed. There are about 700 pregnant women walking around MA this year carrying a child who will have autism (viii ). There are about 1400 parents of 1 year old toddlers in our state who are noticing that their child doesn't point or talk, and who are about to get this diagnosis. This isn’t just happening to someone else.

Myth 10: A diagnosis that your child is sick or disabled is the scariest thing that can happen to a parent. Close, but not quite true. The scarier thing is to learn that your insurance won't pay for his treatments, and that he will go without. That his future potential will leak out of him as you wait years for MA to pass this law. Too many parents in MA are watching their children go untreated every day, and that is beyond scary for a parent. Please don’t let them watch the calendar continue to tick by without autism insurance reform!

Back in my day we used carbon paper

As I rapidly approach 40 I feel that I have embraced the technological boom of the past 20 years with enthusiasm and awe. I was thrilled to go from a bulky Walkman to a slim i pod. I used computer programs at work that were maddeningly temperamental in my twenties.. Remember AS400? One wrong keystroke and I was kicked out of the program I needed.I used to write up reports on carbon paper and have inky fingertips at the end of the day.

Lately I am feeling a pull of nostalgia for the way life was before. Slower and more tangible.

I adore the feel of a new hardcover book..The texture of the binder..the smell of the paper. The small and satisfying sound of a crackle as I turn each page. There are sensory sensations that a kindle would never I give to me. My books upon my shelf are like past loves.. they all mean something to me, taught me, humbled me. Grabbing my tattered copy of The Shining I remember how I was ten years old and was reading it on the sly whenever my Dad would lay it down somewhere.

That book scared the shit out of me. I remember my visceral reaction at one chapter where I flung the book away from me. Of course two seconds later I was scrambling to retrieve it and find out why all work and no play made Jack a dull boy.

My favorite iphone application is called Ambiance.. It has recordings of outdoor sounds that I love to listen to when I sleep. My favorite ones are of the ocean and of rain in a forest. Of course whats missing is one of the most wonderful parts of these sound experiences. The smell of the rain and the ocean are the most heady scents in the world to me. I am slowly being lulled into this flat screen life.

I won't go gentle into that matrix night! For every part of the day you experience via electronic miracle there should be a down and dirty immersion in the real world. I will build my own fires and play my vinyl records..I occasionally write a real letter seal it with wax..just because.

We are supposed to get papercuts..its part of the joie de vivre!

Celebs? Left Wing Self righteous media? Where art thou?

The BP oil spill threatens coastal Louisiana, Gulf Coast fisheries, Gulf of Mexico ecosystems, and perhaps the East Coast, as the spill reaches the loop current.

What is the President doing? How long do we have to wait for action?

When FEMA dropped the ball after Hurricane Katrina the news was plastered with angry celebrities calling Bush evil.Where the hell is Spicolli now? Brad and Angelina?

Anyone? Bueller?

Shouldn't Obama be calling all of the greatest scientific and engineering minds in the world to stop everything and help find a way to staunch the flow of oil before it kills an entire ecosystem of ocean life and pollutes our seafood supply?

Nah, maybe James Cameron will know what to do. He is a pretty good film director.

Is Michael Moore making a movie lampooning Obama for his sluggish impotence?

I ain't holdin my breath on that.

My Gahmin

I decided this morning as I missed a turn and my Garmin started to yell at me how much better it would be if it spoke to me in my mother tongue, the wicked Boston accent.

Hey Kelly, you went too faah, bang a wicked shaahp left ova heah. Ya thats bettah.Stay cleah of the summah people on the rohtary

Garmin would automatically show you where the nearest Dunks was and update Red Sox scores as they happen. The words added in that only we understand,

packie

west a woostah

bang a yuey

Ptown

breakdown lane

calm ya livah you loosah

sketchy

pissa

irish rivearah

the old gahden

Hey Stupid! It's not about you.

Your children are under no obligation to be an extension or representation of you. If you are embarrassed when your Autistic child does something in public that is not considered appropriate, you need to check yourself.

A true advocate is accepting and dignified. Your reactions and responses are being watched by the public and noted. If you explain that your child is Autistic don't you dare apologize!

Do not let a stranger say something your child can hear and not respond.

Be brave, be loving, be a voice your child can be proud of.

I should say now I will jump off my soapbox but I won't.

Ever

Autism and Mood Disorder

The perception and regulation of emotions are obviously challenging for Autistic people.

Genetics and physiology are linked..as many persons with Autism are also diagnosed with mood disorders.

There is a lot of incidences of people with Autism having mood disorders and or depression and anxiety. People with autism are bombarded with sensory overloads, social confusion, bullying, and so many other daily challenges which are depressing.
So perhaps we could deduce that Autism causes the mood disorder but treating the mood swings with medication can reduce anxiety and allow for learning adaptive skills that make daily life easier and more enjoyable.

I dont even think it really matters if they are co morbid disorders. As long as treatment of some symptoms makes quality of life better.

It's my blog and I can rant if I want to....

Can you tell someone has an inner brilliance when you meet them? It crackles behind their eyes and can even feel electric if they are discussing something that excites them.

I feel drawn to these people and repelled by stagnant and negative people. This would seem sensible and most people would say they do the same. But what if the stagnant negative person happened to be stunningly attractive? Perfect body and face, looks that can stop traffic. Would you put up with the self absorbed aspects to soak in the surface beauty?

Many people do and I see them vainly try to assign some noble traits to justify it. The beautiful person makes one tiny unselfish gesture and you have to hear about it for weeks.

It's my blog and I can rant if I want to, rant if I want to........

Carnie Wilson Addict Postergirl

I loved her when she was a big girl and had her own talk show...when she would spar with Howard Stern and hold her own. When she had Gastric Bypass I bought her book and I loved it. She inspired me to have the same surgery years later.

I struggle with addiction to food and wine and so does she. So why do I now look at her on TV and feel dissapointed? She is on Dr Oz, on any reality show that will have her,country singing, celebrity fit club,even pimping her family on tv...selling cookbooks..hustling.Jesus Girl have an ounce of decorum keep your kids off the tv.

When celebrities bring a part of their real life into the public arena to help others it is touchy. Wilson has crossed over into train wreck D list territory again and again..Still I rooted for her.

I saw her this morning on my Fox New Local Station and her answers to Gene were so defensive..

I'm VERY healthy

I did not gain ALL of it back.

Then it hit me why she turns me off now. She sounds like an addict. Defensive, full of shit, excuses, self absorbed. She sounds like me!

It is helpful to me to hear her and use it for my own self improvement. You can't talk your way out of addictions. She is a beautiful girl who seems to care more about maintaining a celeb lifestyle than living a simple life with her family.

That pace and lifestyle is so unappealing to me and seems to be so dangerous for people with addictive personalities.

Underneath it all

Sephora is girl heaven. I love walking in there and feeling that tingle as I see the walls lined with discs of colors, brushes and sponges beckoning my name. The scents lining the walls in all of their bejeweled splendor.

It is the same girlish thrill I would have when my Mom would take me to a store that sold earrings and barrettes as a little girl.

These adornments date back to Cleopatra, primitive and primal, we mark and enhance our features in order to seduce and procreate. The different tribes have different markings..it can also identify what social class you are in in a mere glance.

We may not squeeze ourselves into corsets anymore, but spanx, flatirons, lip plumpers and tooth whiteners are our new methods of torture.

Men generally say they prefer women who don't wear makeup..however I think that men just dont like a lot of makeup.

I think that letting your lover see you with a bare face and rumpled hair is a very imtimate thing. I associate putting makeup on with going to work, being professional.

When I scrub the makeup off the facade is over. I feel more vulnerable, more of me is showing.

Epigenetics rock my world!

Studying the neuropathology of the brain of someone with Autism shows definite aberrations in brain growth, nero patterning and cortical connections. Changes to the structure and function of synapses have also been seen in the pathology of autism in genetic and animal studies. Also, environmental factors are likely to interact with the underlying genetic profile, and foster the clinical heterogeneity seen in autism spectrum disorders. There seems to be little real medical focus as far as I can find in the medical community about the enviornmental triggers.

What does this mean? The three major parts of the brain that show aberrations and autism symptoms brain stem, cerebellum and corpus callesum.


The autism spectrum disorders are a complex group of behaviorally related disorders that are primarily genetic in origin. Involvement of epigenetic regulatory mechanisms in the pathogenesis of ASD has been suggested by the occurrence of ASD in patients with disorders arising from epigenetic mutations (fragile X syndrome) or that involve key epigenetic regulatory factors (Rett syndrome).

Larger datasets in genetics, a focus on the early signs of autism, and increased recognition of the importance of defining subgroups of children with autism are leading to a greater understanding of the etiologies of autism. A growing interest in defining the molecular biology of social cognition, which is at the core of autism, will lead to expansion of our presently limited choices of mechanistically based interventions.

I quote above 2 paragraphs from pub med.gov
http://www.ncbi.nlm.nih.gov/pubmed/17919129?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedreviews&logdbfrom=pubmed

This is all important along with all of the sibling studies and new focuses on the social cognition could really get to the core of understanding autism.