I support this Autism Reform Act of 2009. We must be united in our effort to get the best possible services for our children. Thank you Mr. Robinson. I am passing this on to all my contacts.

I also support.  Mom to a 12 yo Aspie son.  He's high functioning so next to impossible to get the public school system to adhere to appropriate accomodations.  My husband and I earning together approximately $60,000 NET annually- we don't qualify for State CHIP programs/benefits and our medical insurance increases $400/month in January 2009.  
We may be forced to join the ranks of uninsured Americans. No ABA covered,no biomedical treatments covered. - so you read books and implement what you can on your own.  Can't afford over $10,000 annual tuition for local private ADD/ASD school, so we take what little we get from the public school system.  Son was abused emotionally and physically last year at local elementary school.  We are all still healing from those "wounds".   
Turned down for United Healthcare Children's Foundation Grant 11/08- can't apply again until 11/09-  when he's almost 13 yo.  Yes,  our ASD preteens and teens need treatment too- not just early intervention.  They are not "hopeless cases".    
So I support Autism Reform Act --and will do what I can to spread the word. 

CJ's mom

The intent of Congress is not being met in the Fair Hearing process Medicaid/MediCal recepients are subjected to if they are denied a therapy or procedure. In California, for example, the percentage of patients (parents) that prevail at a Fair Hearing is only 2%.

Not only are these children getting the "short end of the stick", they are being systematically abused and neglected in these settings. Failure to create better protections for these children, ensures our prisons will continue to be full of Autistic Adults in the future.

I highly support this as I have an 8 yr. old, high functioning, autistic little girl. The only thing I would want to say is for my child we sold everything we had including our vehichle to buy vitamins & supplements & pay for trips out of state to have her diagnosed & treated because there is not enough info. in our area to HELP these kids. We have a $4000 electric bill too. Because most of our $ went to trying to get her treatment, our bills are outrageous but her treatments so far have mostly been pd. for. What are we going to do in this situation if reimbursement is for educational stuff only? We are in need of so much help right now, it isn't funny. EVERY autistic/developmentally disabled child should receive something as an apology from the government for poisoning our kids to help parents cope & help their children that are constantly & chronically ill. AND, for the pain & suffering they have caused us all. Parents can & do get sick from being around sick kids all the time, especially since there is a genetic susceptibility that predisposes our kids to environmental toxins. There's lost wages & heartache of putting off taking care of yourself to care for your child. I would like to see these biomarker tests for autism also be used to help moms & dads of these kids or after we are gone, the government will have to spend a lot more paying for these kids to live.        

100% in support of CHANGE, including significant improvement in accountability in ALL school districts -- no more "loop holes."  Mandate that IF a child has ANY disability, whether it be in the "clinical" form or NOT, when it impedes their ability to learn, then it MUST be properly and FULLY addressed by a school district (I speaking of Sensory Integration Disorder AND Auditory Processing Disorder -- two disorders that are continually not recognized by schools as meeting the "educational" needs of a child due to the "supposedly" clinical nature of the disability).

as a mother with 2 autistic children. I support this fully! I agree that IF a child has ANY disability, whether it be in the "clinical" form or NOT, when it impedes their ability to learn, then it MUST be properly and FULLY addressed. I believe when the school district or early intervention is involved that they give recommendations and point parents into a direction to get in contact with someone instead of being left to find stuff on their own!

It is disgusting to think that if our children would have had early intervention how much better of a chance they would have had. He re I have a 10 yo son with high functioning autism that does not get any services he needs and our state has a 7+ year waiting list for any assistance. No ABA, no behavior therapy or social skills and very limited speech therapy. Our children are neglected and mistreated. They need help now and the schools need to be ready to be able to care for the amount of children with autism and their varying needs

It needs to be well understood the things that happen to children and their families affected by the Autism Spectrum are discrimination, pure and simple.
 
Our children are given intelligence tests that require verbal ability and then branded retarded or ineducable because they cannot speak. They are abused because they have no voice and no protection from their government. They are denied health care because they cannot speak, despite clear signs of treatable illness.
 
Mass media and false science claims it is inherited "defects", that our children are defective human beings, despite the intelligence and ability that lies behind their illness and limitations.

Discrimination based on color and race, educational deprivation based on color and race, access to health care based on color and race are finally becoming a thing of the past. What will it take to insure the discrimination, abuse, denial of education and yes, even the drug experimentation end for our children?
 
Is this a case of discrimination the Obama Administration can recognize and prevent?
 
Will the economic hardship of their parents in trying to solve the problem on their own out of love cost those parents everything before someone notices that discrimination is yet alive in America and eating an entire generation of children to satisfy it's blood lust or will we defeat this dragon once and for all by recognizing the value of every human being?
 
Autism is an illness brought by greed and corruption throughout the medical, corporate and education systems. Free our children from this beast of greed!
 
Autism is treatable. Our children are educable and have something to offer this world. Hear their voice despite their silence!

This is Pyle Bopkas with Asperger Syndrome from www.youtube.com/bopkasen and representing Michael Robinson.
 
I voted and approved The Autism Reform Act of 2009.

Looking forward for getting it pass!

I Also Vote for Approval of this, Being a MoM Of 2 Boys Who Have Ad/Hd and Sever Mood Dissorders I have had first hand experience with teacher who do not have patients with there children in there classrooms and thy scream and yell at the children and then for every little outburst feel it is in the best safty for the child for them to be restrained... Both of my children have come home with bruises and Finger Nail scratch marks on them from there teachers restrainging them and i Get Told Basically "OWELL" "that sometimes injuries happen during the restraints it is part of the process".... Sometime I set there and think - And These Teachers Wonder Why The Parents Have an Attitude With them? ... As Adults and Teachers SHouldnt they know How to act in front the these Children and NOT let there anger show torge the children?  OR is it More Adult Like to Stand there and Argue with a child that is already upset and in the middle of a mental meltdown and make there situation worse  for them? ... Boy This Is a Very Soar Subject for me! Because I have had First Hand Experience In all Of these Situations!!!

 Please - President Obama, Pass This and Also Make it Mandatory for surveillance Cameras to be Installed IN all School Classrooms and Hallways so we as parents can make sure our Children Are Safe with the people that we are placing the safety of our children with!!!!

Darkfeary -In Ohio

This is something that definately needs attention.

WE NEED REFORM!!! 

Our children are being left behind!  We are meeting for the 3rd time with our childs I.E.P team as we feel they are not meeting his needs in the classroom.  Our son has high funtioning Aspergers since his 22 mos. MMR required vaccine.  Enough of poisening our children and they turning the other way.  We too are financially drained caused by a toxic vaccination.  Enough is enough.  We need your help!

As a teacher that has worked with ASD children for many years, I totally support this reform.

As the mother to a child who is on the Autism spectrum and one who has personally battled the LEA for services , this would change the lives of MANY for the better, this should be a priority with the numbers of children being diagnosed with Autism. I will do what I can to promote this through advocacy groups!

I fully support reform for children and adults with autism spectrum disorders-Obama's promise must be kept.

Do I just post here or how do I sign this?

Excellent idea, and great start for allowing kids with Autism a chance to achieve.

I approve of The Autism Reform Act of 2009 as an American, Autism activist and loving family member of an Autistic adult. Although I appreciate the demand for support of Autism research; I believe assistance for those who are currently affected substantiates an equal (and quite arguably more urgent) need. Individuals who show symptoms of Autism should be equally tested and allowed access to early intervention programs and treatment regardless of religion, race, nationality, class or any other boundaries. Autism sees no color lines and neither should its treatment or diagnosis. These changes are desperately needed for them not only to obtain a fair education and develop necessary social & economic skills but also to compensate for the families’ domestic needs, thus providing a stable living environment. In addition, funding for certification, employment salaries and benefits to attract more skilled social workers, physicians, supervisors and others specializing in Autism Spectrum Disorders should be increased in order to correspond with the rapidly ascending statistics of autism diagnoses.  I am proud to vote for and actively support this Reform Act. Please let me know if there is anything else I could do to help.

Correction to comment CJs mom
Our 12 yo son has Asperger's.   The public school system offers little help without me constantly making sure they are partially following his IEP. Last school year he was denied accomodations and physically and emotionally abused by the staff.  I cannot afford an attorney, so they "won".  Medical/Biomedical  ASD Treatments are not covered by commerical medical insurance.   Our  GROSS annual combined income is approximately $60,000.  Our NET bring home income is $36,000/yr. after income taxes and medical insurance premiums.  We've taken out loans and depleted our 401Ks to "live" and subsidize some ASD treatments/therapies.  Yet,  we are too "rich" for State CHIP funding. ???  That does'nt cover ASD treatments either.
I don't think we are alone. 
Please help our children. They too are great deserving kiddos.

CJs mom

My son also has HFA.  We pay approximately $1,200.00 per month for treatment . . . our insurance (for which we pay approximately $1,000.00 per month) pays for the other half ($2,400.00 per month total plus insurance premiums).  We were told by the early intervention unit that my son would be lucky to be potty trained by age nine . . . and perhaps might mumble a few words in his early teens . . . he was three and a half at the time.  Today, my little boy is six and is potty trained, has only a small speech delay (roughly three to six months), and actively participates in private school designed for typical children.  My point at large is . . . why is the government so willing to write our children off . . . we had several medical opinions outside of the state "approved" list who said my son could learn and was not a lost cause.  And why did I get such extraordinary results . . . because I sold my home to pay for treatment. 

Excellent work all - Please let all those you know and have on your email contacts Vote here also.  We need to get this done to make sure our children are safe and put an end to the crazy out of pocket expenses us parents all have for our child with Autism.
This is Insurance REFORM, School Policy REFORM, Funding for Schools that is needed and Protection and Advocacy REFORM, Reimbursement to parents for ABA and other out of pocket expenses..   We need this.  Let's Make it happen.  Michael

I vote yes please pass this reform for our children and their parents so that maybe one day some of these very children may be the president of th eUnited Statea of America. They deserve it.

I completely support this.  We need actual help not empty words or promises.  I'm sending this to everyone I know.

I support the Autism Reform Act. I will forward this to family and friends.

YES! YES! YES!  This needs to pass!  These little ones deserve health care just as much as anyone else.  What is the debate here?  It seems pretty simple to me.

Yes, we need to support this.  We also need to create supports, programs and vocational opportunities for the adults on the autism spectrum.  People are going bankrupt providing the therapies and treatments their kids need, and many don't have the money to do them in the first place.  Our kids deserve to have the interventions they need and not be excluded from health care, education, and community activities and programs.

Please support this, we need help for our growing number of children with Autism.

Going thru due process myself and it amount of errors and time-delay of OAH is incredible. It isn't true that it is "easy for parents". Last week, the OAH (hearing office) had an emergency training for their employees based on my complaint. It is now easier to get a phone call returned but now I'm having to study the law in order to defend myself.

My ONLY real issue with this action is that it is ONLY for people with ASD>  What happens to children with FAS, Fragile X, Dandy Walker Syndrome - and other similar issue who are discriminated against in the educational environment in the same way that kids with ASD are? 

My son has a dual dx of ds/asd.  HE needs many of the same services as well - and did not get them in school.  HE also was isolated, put in a padded cell, physically restrained - all for acting out as a person with a developmental disability might.

It is well past time that the scales were balanced. I too support this measure.

Things that have been proven beneficial for other issues (wound healing, stroke victims, the bends) should be seriously studied for autism treatment. Yes, I am referring to HBOT.

Autism Reform - Vitally necessary for suffering families:

I know of a family that is greatly suffering as I write this piece.

Michael, thank you for sending your post to my online support for parents who have children with autism, P2ParentsChat, I'll also forward to my local support group AutismNE Northeast Ohio parent support and networking.  Your email about reform came like an answer to prayer.  I have a family who has been in a continuing chrisis of many issues that face families with autistic children (I had a very long conversation with the father just yesterday).  This family has 4 boys 2 of which are diagnosed with autism and 2 that have some sensory symptoms and learning delays.  This family is dealing with many challenging issues not only medical issues but also economical, educational and living conditions.  There isn't enough support from agencies and very unfortunately there isn't much ongoing help from the police department in their area for neighborhood abuse.  My whole heart goes out to this family and I hope this reform will be heard and accomidated to the fullest extent. 


I hope other families will share their agonies on this board to let the offices know that there really is a major chrisis for families who autistic loved ones.

Very Truly Yours,

Marian Helmick
Parent to Parent for Autism
P2ParentsChat, AutismNE
(find on Yahoo groups for those seeking parent support/resources/networking.)

This Act would change the life of my little brother and all the little kids that are sorta like him.  I like what I see and I want President Obama to sign this Law and get the kids with Autism and Aspergers the things they need because I see people paying money until they can't pay rent and that is not right.  All these bailouts worth so much are not worth more then my little brother, ok ?  Change is what President Obama said and I know he will do it, so we should see this done so kids can get whatever they need when they have Autism because it is hard on the families I know because I have watched.
Joshua Anthony

What a great idea!  Holding folks responsible (be it the government, the schools, individual staff members,...whomever!)
I wholeheartedly agree as both a parent of a 14 yo son with Asperger Syndrome who has repeatedly been abused by the school system, abused by staff and removed from our local public schools due to AS characteristic behaviors.  (Even the superintendent suggested I sue the district else he can't make the schools do what they are supposed to thanks to the Union contract which protects them! With therapies, etc., who has an extra $20K laying around for that?!?!  )  Now at a charter school, he doesn't receive near the abuse, however, he also doesn't get the diversified education. 

And, as facilitator for 2 support groups I can attest - my son's case is not an exclusive!  Plus, all the talk of research and early intervention (which are BOTH very necessary) does NOTHING for the many teens and adults that have missed out on it all! 

They can pay NOW (in the way of beneficial autism services) or they can pay later (in the way of jails and other facilities).

I support this Act and hope it will pass. My son is 5 years old and has received Early Intervention from the age of 18 months to 3 years. He has ASD and Sensory Integration Disorder. He won't chew food, refuses solid food. It was listed on his IEP when he entered preschool for OT services, but he never received them. Again this year, his IEP lists OT services...the school district again has "lost" the paperwork. I cannot afford private therapy. It is sad how sometimes our kids are put on the bottom of the lists, neglected, treated unfairly, not just physically, but in the entire educational system. I know it's gotten better, but we need better OT services!

I have an 11 yr old HFA son. He struggled so much in regular school even with IEP modifications that I have put him in a county alternative school. I am very happy with the classroom he is in. I wish more counties had the same option available to me. However, there are only 8 spaces. Fortunately we are a very small county. I spend so much money every month for non-insurance covered supplements and food. It is my second largest bill besides my mortgage. I would work three jobs to keep it up if I had too.

Shelby Miller in NC

I whole heartedly agree that this needs to pass...   Our family fits into one of those groups that makes too much for most assistance and yet not enough to pay for all of the expenses we have...    many months we choose between paying rent or the car payment and my son's medications or therapy expenses... this needs to change... I know so many are in our position or worse off and assistance and change is needed....  Good luck in this ... and I pray that is passes!

I support this for my 10 year old son with Aspergers - he deserves & needs all the help and support available to him.

I wholeheartedly support this Act!  As the mother of a 7 y/o autisctic daughter, I know firsthand the emotional pain, frustration, and financial burden families affected by autism face.  It hurts even more knowing  that there are effective treatments out there (ABA, SLP, OT,social skills, and BioMed approached such as detox therapy, vitamins, minerals to name a few).  However, the agonizing truth is these interventions are costly.  You either have to be rich or spend your way into poverty trying to do best you can to help your child.  I am out in Maryland, and in my school district parents have to fight to get any kind of services.  Even if you educate yourself about disability law and try to advocate on behalf of your child, you stand a far greater chance of getting the school to listen if you can afford to hire a lawyer.  As far the heath insurance industry we all know too well that they are in the bussiness of "collecting not spending".  So yes! We need both educational and health insurance reforms. 

M. Chery, Maryland

We need this for our lovely, beloved ones with autism.  Please
help, it is so important to so many.
Urging everyone to vote for change in Autism parity, research,
insurance coverage, needed therapies, all of it.
Thanks so much.
Ellen

Our son is 19 now, and we are still waiting for "change".
I vote YES

I support this Reform Act.  I would like to add a comment to the federal & state governments:    While the initial cost of therapy and early interventions for children with autism is great - it is also VITAL.   Think of the long run:  When you give children with autism all the PROVEN help they need to flourish, learn and grow, the opportunity for them to grow into functioning, taxpaying workers is far greater than if nothing is done and they end up in a group home or government funded homes when they are teenagers through adulthood.  Think about that:  taxpying citizens or citizens that need tax funds?   Therapies that are PROVEN and have been used to help these children is expensive and should NOT be based on whether or not the parents can afford it out of their pockets.  NO ONE - poor, rich or middle class asks for autism in their children and the children don't deserve it.  It becomes an added burden and punishment if they don't get the help they need.  The US and state governments MUST recognize this growing problem and that it is NOT going to go away - it WILL get worse.

I have a 16 yr old who is labeled mild MR with speech delays.  He is the youngest of 5. At ten we were contacted by a bordeing neighbor of a commercial property that "more likely than not" there was some ground water containmantion that migrated onto our mini warehouse property.  I worked in the office during my pregancy.  These toxins are orderless, tasteless vapors and as they breakdown are worse than the original form.  When I googled in the names of these toxins guess what, they cause central nervous system disorders.  We fought this international company for 5 to 6 years, spent money we didn't have and ended up selling income producing property to resolve the lawsuit.  We live in Texas and the TCEQ is a joke.  There is no enforcement on violators and even when I pointed out statues that they are in violation of nothing to "force" any action was taken. My family and I  are living with the nightmare or constanly pushing our son to be the best he can be and keeping him safe, while footing the bill for therapy from sensory intergration, biofeedback, homeapathy, hyberbaric oxygen,chriopratic and acupressure treatments, meds etc. without assistance from anyone.
In our school district we have "lifeskills" for our children with special needs and some say we are "lucky" to be in a district that provides what it does, but it sadly misses what could be and should be done.  This minority group gets left out because they are a "small" segment of the overall student population, but should a student become pregant, she and her baby can both attend school with programs for their needs.  If your son or daughter acts like a thug we have an alternative campus for them to attend to help get back on track.  Trust me these too are minority numbers of effected kids.  While none of my other 4 children were pregnant or acted like thugs, but my school and federal tax dollars funded these programs.  I have also volunteered on pto boards and booster clubs that have raised money to enhance kids learning experiences, funded $70,000.00 one night senior project prom events, provided athletes and coaches with equipment and scholarships and contributed to cheerleaders to compete in New York and numerous other band, choir, and drill teams fundraiser to do similar things.  The point is we should be doing the same for our kids.  We should have a booster club to enhance their learning experiences, schloarships to enchance teachers and students and to provide the equipment that the district do not provide for.  We need centers where our kids can go that are reasonable and affordable and welcoming and that provide all of the above mentioned therapies that we have paid for out of pocket at one convienent location, with transportation provide by our school districts.  We need the opportunity for our kids to be an active group on our campuses so that they are not as likely to be mistreated.  That happens when parents and there realms of influence work together on common goals and for common experiences that everyone can be a part of.  The money is out there through both private and the government sectors and I see the booster club as just one way of getting access to part of that money.  The booster club helps servesthose of us who need a unity of voice so that we can take action on programs that best serve our children.  I support the government "bailing" me out for all those years of cost and bringing the cost down for these therapies by bringing together under one roof.  I support reform in this area and that is why I voted McCain/Palin.  Who better to advocate for our children than someone with her own child and their own story. I pray that our voices our heard for our childern who have not been heard. 

100% Support of change I have three children with Autism and all need intensive therapy.

I support this act.  Our children deserve the most appropriate education and services. 

I fully support changing the landscape of the way we view autism in this country.  However, the way that President-Elect Obama and Durbin are approaching it (in the current "Autism Treatment Acceleration Act of 2008) will give a monopoly to "Medical Home Models". I can't believe with everything that has happened this week  here in Illinois that our legislators would continue to try and give favors to their friends (TAP and the AAP) while families are truly suffering.  I just hope Patrick Fitzgerald is watching.-cblakey

I fully agree that My Angel, Benny Ely,III (grandson) and other children and adults with Autism need all the research and help that is possible.  These drug companies need to take responsibility that their drugs have caused some (or all) of these cases. I read and try to learn everything I can about what is taking place in the research, etc.  and I don't like the way the drug companies have handled some of their comments and also some of the doctors who seem to be on the payroll of the drug companies. I applaud the doctors who research and admit that drugs have caused it.  Everyone needs to work for the same goal of finding THE CURE, NOW--ASAP.

This act is a good first step to helping children with autism acheive their potential. The savings to the nation will be enormous as these children become productive citizens.

I support this reform...I have a 4.5 year old son diagnosed with High Functioning Autism.  It appalls me to look at what may become his future without this reform.  Heather

we need this to pass. send this to everyone you know. I am michael robinson's ex-wife we share the most wonderful 15 yo autistic boy. his name is Michael he is my gift sent from heaven. we have had to fight every step of the way to get him the services he gets. all families with asd children need help.luckily michael sr. is out there fighting for ALL our kids. we also have 2 daughters who love and take care of their brother. we have a great emotional support system but no one helps with the cost of having a child with asd.or the toll it takes on a family our whole life revolves around michael and his needs. thanks michael sr. keep up your work.