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.

Soothing Rituals

I was a little blue today and decided to get my nails filled. As I sat there I thought about what it is that makes me like being there. I am much quieter when I am there, because I hear the other customers and they seem like loud brash white people talking about me, me, me..as the girls smile and work on their feet and hands.

I enjoy the methodical clattering of the porcelain pots that hold the powders, the tap and swirl of the brushes, and the strong smell of the acetone. I watch as the petite Vietnamese woman use such precision to apply the acrylic and to paint it..it comforts me just to sink into my chair and I rarely talk there unless they ask me a question.

I love listening to the women speaking Vietnamese to each other..I can tell when they are fighting, or if they are making fun of someone. It is a girl's only place for the most part, and I enjoy listening to the teenagers chatter and the brides make plans..It is a perfect people watching venue.

Today I did not have the woman I usually do, but I know her because I have been going there for years. She smiled at me at one point and said, "they all like you here". I am not sure why she said it but it was sweet and reaffirmed why I enjoy going there so much.

Sometimes normal rituals make me feel connected and that is always affirming.

A letter for my boy

Baby Boy,

I have never loved anything in the whole world the way that I love you. Here is what I want for you.

I want you to always learn from your mistakes.

I want you to have compassion and forgiveness in your heart.

I want you to feel pride and self reliance and know that you can do anything you want if you try hard enough.

I want you to always know that I am here with my arms open to comfort you and love you unconditionally. Always know how very wanted you were and how cherished you are.

I want you to help others and in turn they will help you.

I want you to love

I want you to be loved

Understand your gift, the reason that teachers and student love you so much, that special sparkle and joy you have..it makes you different and very special.

Knowing your gifts will help you make the most of them and I want you to understand karma.

Autism Speaks, Time to listen

Please join me in my fight to make a difference in the lives of the more than 1 million Americans living with autism today. We walk to show our pride and support of our son Jefferson. Jefferson makes us proud every day and touches everyone who meets him. Without the amazing strides in intensive therapies for Autism, Jefferson would still be silent and unreachable. He is living proof that services and therapies really do work.

We are participating in Walk Now for Autism to help find a cure for autism. Autism is the second most common developmental disorder in the United States affecting one in every 150 children born today. Despite some promising discoveries, the cause of autism is unknown and a cure does not exist. Research is crucial. Every 20 minutes another child is diagnosed with autism. Not only must we find ways to improve the quality of life for children and adults with autism, but we also must find a cure, and soon.

Walk Now for Autism is our chance to make a difference in the fight against autism by raising money for autism research and heightening public awareness. Please join me in my fight as I raise money to help fund essential research. You can donate to Walk Now for Autism and/or join my team online using the links at the bottom of this page. Donations can also be mailed to Autism Speaks using the donation form located on my page or send me a check made out to Autism Speaks.

Thank you for taking an important step in the fight against autism.

Donations are tax deductible to the fullest extent allowed by law.
Autism Speaks 501 (C)(3) Tax Id #: 20-2329938

Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly.

Follow This Link to visit my personal web page and help me in my efforts to support Autism Speaks or join our team and walk with us!

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Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser:
http://www.walknowforautism.org/greaterboston/jeffersonsteam?faf=1&e=2537787520
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Peace,

Kelly

The Pilgrims would laugh at us

The economy is in the shitter. I cant afford my 5000sq foot home anymore. Waaaah! when did Americans become such a bunch of pampered pussies? We used to be goddamn pilgrims! We started the chain of natural selection here with some of the toughest bastards from England. We survived winters in America with very little food and freezing cold weather.

Now we cant function without our creature comforts and our taken for granted technology.I cant make it through Boston without my Gamin and I'm horrified when my phone loses its charge! God forbid I go a day without sending 100 texts to my friends.

This immediate gratification and pussification is killing us. We need to appreciate what we have more and get back to doing actual labor. I worry how dependant out kids are on technology and what that will mean for them later.

I think I may join Daryl Hannah and just live in a tee pee for a while.

Suck it Autism

My son is now socializing with his peers. Trading Pokemon cards on his school bus and though this will not seem like a good thing he told me somebody was a pecker head the other day.

I did not let him see my face as he would have loved the shock and I turned away and said, Bubba! you know that is a bad work right? However he did use it creatively and it did indeed sound like his cousin was being a pecker head.My point being that he is using language in less of a rote way. Bubba has feelings and empathy and very strong opinions that he is just learning to express.

His motor skills have improved as has his confidence in body awareness. Gone is the boy who slumped over in a heap after school. Now Bubba rides a scooter with aplomb and seems to never get tired.

There are still struggles ahead, concentrating on homework and completing it is challenging. Bubba wont raise his hand to answer the teacher just yet. Bubba's temper when he cannot easily master something needs to be reined in.

I went to see a school play that Bubba was a part of, he did well reciting his lines. Afterwards I saw him bowing his head down lost in his world and a little girl came over to him and touched his shoulder and whispered to him. I saw him look up at her and smile, snapped back into reality.

He does that to almost everyone he meets. Charms them with his innocence and openness, and his own classmates want to reach him and to know him. I see it time and again and feel comforted that he gets loved even when he is out of my nest.


Suck it Autism, we are still working around it and finding our way.

Josh Beckett Owns the Yankees and what makes Boston Fans great

Josh has his mojo back and pitched the sox to a 6 zip victory against the Yankees. His pitches were electric and beautiful and seeing him hammer the Yankees bullpen makes all right with the universe. The ire of Boston baseball fans is a fearsome thing but our love and loyalty is just as strong. Ive heard so may sports radio blowhards complaining about fans making Big Papi bow when he hits a homer. Idiots! He is acknowledging his fans undying devotion and faith in him. This is a part of baseball in Boston that people never seem to understand.

We love our baseball here and we are at our best as fans when our faith is tested. This is what Boston Dirt Dogs are all about.

We even applauded Mr Ego aka Roger Clemens at his last game at Fenway. We love our players deeply, sometimes we hate them bitterly when they leave us. I personally cannot stomach the sight of Johnny Damon with shorn locks in pinstripes. he just looks like a Borg who has assimilated into the collective douchebagdom of Yankees.

I will gleefully crow about every victory but secretly I am already worried about the next game. Such is the plight of a girl in Boston in love with an entire baseball team. I wouldn't have it any other way.

Breakfast I'd like to f*ck

http://www.rizzotees.com/

How far will people go for fame: Jon and Kate plus 8, and other random musings.

I am sorry faithful readers I have been neglecting my blog. I promise to write more often.

I am not fond of reality TV in general but I have seen Jon and Kate several times because my Daddy likes them, personally I find Kate to be a snarky know it all. Jon seemed an affable goofy henpecked Dad.

I saw the tabloids and kind of thought, oh that poor family, how embarrassing. Then I see a commercial on TV advertising Jon and Kate's first face to face since all the cheating stories were all over the tabliods. So now I see how they roll. For Christ sakes, don't people have any sense of privacy anymore? We can see people withdraw from heroin, vomit into Ziploc bags after purging, pretty much any personal problem has a show. Do we really need to see humanity debased with our evening cocktail?

I don't have any interest in watching something so personal and sad being exploited for a bigger house and a book deal. this is what America is becoming. There is no modicum of decorum anymore. I feel like an alien because I know these shows get huge ratings and I have no interest in seeing people airing their problems on tv.
I have blogged about this before and I am seeing the line get crossed more and more each day. We will absolutely see people die right on camera soon. I know it is hinted at already but I believe the next logical step is executions, accidental deaths, illnesses..all for our viewing pleasure.

Tabloids just 10 years ago were shunned by people when they shot pictures of a dying princess Diana..I really think if that happened now that the pics would be sold for millions and the photographers revered.

I am super happy to report that I don't know the name of the reality show that Spencer Pratt and Heidi Montague are from. I do know they had a fake wedding and maybe a real one two? They are splashed all over magazines and I every time I look at their platinum blond heads and white teeth I think of a butter cream frosted cupcake. Then I feel queasy.

Reality shows are like olestra filled cupcakes..they may taste sweet at first but you will be embarrassed that you succumbed.

Look girls, interchangable heads and breasts!

I saw this at Target and I stopped in my tracks. I thought of three things, Picasso and the show Nip Tuck and Dexter.

Literally this set turns girls into interchangeable body parts and turns the girl into the decorative accessory.

This toy sends a terrible message to girls and my friend Bree said to me "Yes, totally weird. I mean c’mon now – floating heads with interchangeable bodies? It literally splits women into pieces that need to be altered. Women already have problems looking in the mirror and seeing a “whole” person, we divide ourselves into parts – hips, ass, stomach, face, chest – and criticize every little piece. We don’t need dolls teaching our little girls what categories they can (and apparently, should) change.

Ionic Foot Baths cure Autism!

Extra, extra! Read all about it. Ionic foot baths will purge heavy metals from your child and cure his Autism.

Really? Cmon people the junk science has reached an embarrassing low here.
Positive and negative ions don't resonate through the body in response to any such device. And the skin has no ability to excrete toxins. Real detoxification of foreign substances takes place in the liver, which modifies their chemical structure so they can be excreted by the kidneys which filter them from the blood into the urine.

The change in the water color? would happen if your feet were in there or not! Add the addition of your skin cremes, nail polish,sebum and pieces of skin. Also the darkening of the water is due to the electrode conversion and as I said this happens sans feet.

Ionic detox cleanses your cells?

No it doesn't..drink more water, that's what your cells need.

Here is Kelly's common sense approach to how to care for neuro-typical and neuro-diverse children alike.


avoid refined sugar
white flour
soda
juice in extreme moderation
think about balance, salty/sweet/savory
teach your children to enjoy food preparation, it will make them want to taste the food. With balance, also moderation, if your child does overeat something too sweet or fatty, talk to them about how it makes then feel. Are you tired? Sick? Sleepy?

help them make the food and body connection.


Leave the quacking to the vain celebs who can afford to shove tubes up their asses and flush away 3000 pounds of Kobe beef remnants.