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Posts Tagged ‘Autism Speaks’

Chicago’s ‘An Evening with the Stars’ Raises Over $150,000

On Oscar Night, Sunday, February 26, 2012, Autism Speaks hosted An Evening with the Stars, a red carpet spectacular with the glamorous backdrop of the 84th Annual Academy Awards® broadcast, at the Hyatt Regency O’Hare, 9300 Bryn Mawr Avenue in Rosemont, Illinois.

An Evening with the Starsbrought the glitz and glamour of Hollywood to the Windy City, featuring red carpet arrivals, pre-show interviews broadcast live on the big screens and live and silent auctions with prizes ranging from dinner-theater packages to all-expense paid trips to Hollywood and New York City.

Guests were treated to a very special multi-media segment featuring milestones and accomplishments of individuals on the autism spectrum, with musical accompaniment provided by Chicago recording artist Andrew Salgado and Grammy Award winner, Jim Peterik.  Salgado and Peterik, who is best known for his work with the band, Survivor, and Ides of March, have been long-time supporters of Autism Speaks.

Steven Insoft, Autism Speaks’ Chicagoland Chapter board member and chief financial officer of Aviv REiT, served as Executive Producer of this year’s event. Insoft dedicates his involvement to his son, “For me, this is a very personal cause. My involvement is for my son and for my family, as well as for the tens of thousands of other Chicago area adults, children, families and caregivers who struggle with autism.”  Through the generous support of Aviv REIT, the Insoft Family, the Schlaack Family, FirstMerit Bank, Cathedral Rock, Bulley & Andrews, Maplewood Senior Living, the Village of Rosemont and others, the event welcomed more than 300 guests, raising over $150,000 to support Autism Speaks.

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In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.

*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

‘The Doctors Are In’ Live Chat

February 29, 2012 1 comment

Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.

Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.

The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.

We hope you’ll join us!

What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page

Transcript for “My Child Has Autism: How Do I Get Insurance?” Webchat

February 28, 2012 1 comment

On Monday February 27th the Government Relations team hosted their first webchat, “My Child Has Autism: How Do I Get Insurance?” The webchat was hosted by Lorri Unumb, Esq., Vice President for State Government Affairs.

7:55
Comment From Guest

Thank you for being an advocate for our babies by the way!!

7:56
Your welcome! Please visit Autism Votes to find out more about our advocacy efforts! http://www.autismvotes.org
7:56
Comment From Fawn

Thank you for allowing this opportunity

7:56
Of course! This is our first chat and we are so excited!
8:02
Hi — It’s Lorri Unumb. I’m so glad to have all of you on the webchat tonight. I hope I can answer some of your questions in this very frustrating world of insurance coverage for autism! In addition to working for Autism Speaks, I’m also a mom of 3 boys, and my oldest son, Ryan, is on the severe end of the spectrum. He’s 10, so I have been dealing with insurance (or lack thereof) for several years.
I don’t want to waste any time, so let’s get started! Please forgive typos; I’m typing as fast as I can so I can respond to lots of comments!
8:04
Comment From Allison

I keep trying to post my question but it wont send….Confused…Or does it send to you and then you post it?

8:04
Hi Allison! We have so many questions coming in – we need to accept them! Hang tight!
8:04
Comment From nancy

Am I at the right place for the talk?

8:04
Yep! You are at the right spot!
8:04
Comment From Guest

Hi! Its 8 – can we jump in?

8:05
yes! Ask Away! we already have received a ton of questions and are doing our best to answer them all!
8:06
Comment From Ralph

Is there any specific information for Washington State?

8:06
Hi Ralph! Check out our Washing State page on Autism Votes!http://www.autismvotes.org/site/c.frKNI3PCImE/b.4432369/k.25AF/Washington.htm
8:06
Comment From Beth

Hi Lorri, My son and I live in Michigan.

8:06
Hi Beth–We expect important legislation in Michigan to start moving this week in Lansing. Keep posted atwww.autismvotes.org/Michigan
8:06
Comment From Guest

Hi we live in houston texas and we have self funded insurance through my husbands work. We have pleaded with them to cover autism but nothing developmental or psychological is covered. We make too much money for medicaid and chips. Is there any help we can get? We cant afford ABA therapy or much therapy at all with a family of 5. We started ABA and put it on credit cards and saw so much progress with my son. We had to stop when we ran out of money. I have tried to replicate but he is not doing nearly as well. HELP! PLEASE

8:06
Hi Houston, Texas — As you know, self-funded plans are not subject to state law, so even though Texas has passed an autism insurance mandate, it is of no help to you. How big is the company your husband works for, and what type of company? We have had lots of luck convincing many self-funded companies to voluntarily cover ABA, even though they don’t have to per state law. Have you used the self-funded PowerPoint available onwww.autismvotes.org? If you want to arrange a meeting with your HR director, I’d be glad to speak or meet with them.
8:09
Comment From Fawn

What about Wichita, Kansas?

8:10
Fawn–Kansas now only requires coverage for state employees. Important bills have been introduced in the Kansas legislature to expand that coverage to more families. Learn more atwww.autismvotes.org/Kansas
8:10
Hi Sandra — What state is your insurance written in? If it is written in a mandate state (the “green” states onwww.autismvotes.org), and if you have a policy that is subject to state law, then you might be able to get coverage. It depends on whether the camp has providers/counselors with appropriate credentials and if they are willing to bill their services in a way that insurance companies are accustomed to covering. Generally, you have to fight for any coverage that is not run-of-the-mill, but if you’re willing to fight a little and can get appropriately credentialied providers to use appropriate CPT codes following a doctor’s recommendation for social skills training, then coverage is possible.
Sorry for all of the if’s — but that’s how insurance works!! :-)
8:11
Comment From Sandra

Does Health insurance cover camps that teach social skills for children with aspergers

8:13
Comment From clara

my son has medicaid,can my husband add him on his insurance cigna? can he have 2 diffrent insurances in nyc? thank you

8:13
Clara — Your child can have both private insurance and Medicaid. If your child does have both coverages, then Medicaid will become the “payor of last resort,” meaning that you or your provider has to bill insurance first, and then Medicaid pays second.
8:16
Comment From Guest

Do you know if any policies in the state of Ohio will cover A.B.A. despite the legislation not passing?

8:16
Dear Guest from Ohio — Yes, there are some self-funded companies in Ohio that offer coverage for ABA. Two that immediately come to mind are White Castle and Ohio State University. And I think Nationwide Children’s. Beyond these self-funded employers and other like them, there generally is not insurance coverage for ABA through private health insurance in Ohio yet. It’s one of the states where we have not passed an autism insurance bill yet. But . . . we are working really hard this year. I had a meeting with some Ohio legislators in Columbus last week, and I’m meeting with the Governor’s office next Tuesday. So please help out and don’t give up hope! In the meantime, you might investigate Medicaid coverage or, if changing jobs is an option, employment with a company that does cover autism. Sorry the news is not better just yet!
8:18
Comment From Fawn

My daughter has been diagnosed with PDD/NOS. How do I find out if insurance will cover therapies

8:18
Fawn — PDD is a covered diagnosis under health insurance IF your policy is written in a state where an autism insurance bill has passed. Look for the green states on the map atwww.autismvotes.org.
8:22
For information on self-insurance plans, visit:www.autismvotes.org/Self-insured companies and autism coverage
8:22
Comment From Mary

In SC – what are your tips to battle the self insured loop hole for employers

8:22
Hi Mary — For a self-funded company, contact the HR director and ask for a meeting. Send them my “Self-Funded Plans: Establishing an Autism Benefit” PowerPoint; a link is being posted here now. If you can get a phone conference or an in-person meeting and would like for me or someone for the Autism Speaks Government Relations team to go with you, let us know! We’re more than happy to do the heavy lifting. I also have sample letters. Write to me at advocacy@autismvotes.org if you want a copy. Good luck!
8:25
Comment From Neil

also has the law passed in NY and when does it go into effect

8:25
Neil in NY: Yes, Neil, Governor Cuomo signed the bill into law last Nov. 1. It takes effect this November 1. To learn more, visit:www.autismvotes.org/New York
8:25
Comment From Dianne Coscia, MD

Hello Lorri, I am a developmental pediatrician in Boston who is needs to better understand for my patients where the line is drawn for schools with providing ABA and where insurance picks up. Can you help advise?

8:25
Hi Dianne, and thanks for your question. I think the easiest way to think of the “line” is to consider insurance the payor when ABA is provided in a home or clinical setting by non-school personnel. It’s a little tricky in states like Massachusetts where there has been decent ABA provided through the schools (unlke most of the rest of the US). Write me offline if you want to explore further particular situations. Thanks!
8:26
Comment From Maria

Good evening. Not sure if you can answer my question. I do have private insurance, good one and I do have a Medicaid for my child. My private insurance saying that if I have a Medicaid I should close my private insurance. Is that true?

8:27
Maria — I guess it depends on where you live. It’s possible that Medicaid offers better autism coverage in your state than insurance does, but that seems unlikely. My personal suggestion would be to hold on to your insurance, too.
8:27
Comment From Guest

Hi Lorri, Francine Hogan here, I have a question. I applied for insurance and they would only accept us for a high deductible policy based on my son”s autism. What can I do?

8:28
Hi Francine — Is your insurance policy written in a state that has an autism insurance mandate? If so, then you should not be discriminated against based on your son’s diagnosis. If you’re in a mandate (“green”) state, then complain to your state Department of Insurance.
8:30
Comment From Derrick Howle

How will the new Health care law impact the state mandates that have already passed and what coverage can we expect in 2014?

8:30
Derrick: Very important question. The U.S. Department of Health and Human Services is now implementing the law and our champions in Congress are working to assure that behavioral health treatment is included within the essential health benefits package each state is required to offer. To learn more, visit:www.autismvotes.org/FederalHealthCareReform
8:30
Comment From Guest

I’m in Kansas, and Humana doesn’t seem to cover squat…

8:31
Comment From Tracey

Hi there! The company that my husband works at is self insured. They agreed to pay 80% of the cost of ABA therapy for my 2 year old twin sons. After 2 months of attending this ABA school, the insurance company denied our claims stating that the DX code paired with the PCT code given by the school doesn’t warrant coverage. When I ask what code they need for us to get coverage they won’t tell me. It’s a nightmare.

8:31
Hi Tracey — I have heard of this before — the insurers tell you the code isn’t the right one, but they won’t tell you what the right one is!! Argh! Have you talked to your provider to determine if there’s another code they can use? Your provider might wish to get guidance from the Assocation for Professional Behavior Analysts, which helps ABA providers understand billing and coding better. Do your sons have 299.0 diagnosis codes? If so, you may wish to complain to the U.S. Department of Labor, which oversees self-funded plans.
Hope this helps a litte!
8:32
Is your insurance through the State Employees Health Plan (SEHP) or other? If through SEHP it should be covered. If not, we are working on it! Please visit and sign up to receive Action Alerts.
8:34
Comment From Kendra

How do you get Ins to pay for autism services/therapies?

8:34
Kendra — First you have to determine if your insurance policy is written in a state that has an autism insurance mandate — the green states on autismvotes.org. If your policy is written in one of these states, then you need to determine if it is a fully-funded policy. Fully-funded policies are the only ones subject to state law. Some states have exceptions for small employers, so check the FAQs for your state on autismvotes.org. If you have a policy that is subject to state law, then you should find a provider that accepts insurance and ask them for assistance with billing insurance. Let us know if you have problems, and good luck!
8:34
Kansas Guest – please visithttp://www.autismvotes.org/site/c.frKNI3PCImE/b.4425759/k.B84C/Kansas.htmfor more information
8:36
Comment From Jill

Hi. I am in CT with a self-funded policy, which of course, opted out of the CT mandate to cover therapies for autism. Any tips to getting coverage for ABA when the policy doesn’t cover it? We are already working with the employer, but it is a municipality, so any changes in coverage are subject to collective bargaining (always a difficult process).

8:36
Jill — On a few occasions, I have seen self-funded employers cover ABA for a single employee while going through the process of determining whether to add the benefit to their policy generally. It is worth asking for!! And as I said to the others on this webchat with self-funded policies, please ask us for help if you want our help negotiating with your employer. Contact us atadvocacy@autismvotes.org.
8:36
Comment From Neil

Hi, can you give me the basics of the new law in NY and will my insurance company pick up some or all of the cost for summer camp or would I be able to get reimbursed

8:37
Neil – please visit www.autismvotes.org/newyork
8:38
Comment From Juan

Hello Lori! We are having a hard time in the state of Georgia to get insurance coverage, we have BCBS of Georgia and that only gives 30 hours of OT an speech therapy a Month. That is not enough as you know, no ABA Therapy is covered. Any ideas? We have started thinking of move out of state to another place state with coverage. Any suggestions?

8:38
Hi Juan — I’m sorry you’re in Georgia!!! We came very close to passing an autism insurance law there a few years ago, but didn’t. ;-( We’re working on a bill for next year, so don’t give up hope. In the meantime, you might wish to consider a move, frankly. It’s pathetic that I’m even recommending that, but we’ve have a lot of families move to South Carolina in the last 5 years just to get coverage for their kids. Alternatively, you could try to get a job with a self-funded company that offers autism benefits, like Home Depot, Time Warner, Microsoft, to name a few. There are more and more companies every week voluntarily adding autism coverage in response to requests from employees.
8:40
Comment From tracey

question from CT – I requested a neuro psych for my son who was diagnosed PDD NOS at age 3 – he is now 11 and going into middle school if the school does not agree to testing will insurance cover?

8:40
Tracey from CT — Insurance should cover medically necessary testing for your son. If you are pursuing testing purely for educational reasons, you may have difficulty. I recommend that you try to get pre-authorization for the insurance benefits. And if you have problems, complain to your state Department of Insurance.
8:42
Comment From Guest

Blue Cross Blue Shield of MO and IL said they cover ABA therapy at an office, but not at my home, is there no other way around this? We have been paying for at-home ABA for a few months now. Is there a home-health code we can use?

8:42
Dear BCBS of MO and IL — The location of service should not be a basis for denial of coverage. Contact Angela Nelson at the Missouri Department of Financial Institutions and Professional Registration. (I think I got the name right; it’s Missouri’s version of a Departmnet of Insurance.) Angela is a terrific consumer advocate and very familiar with the autism insurance law there.
8:42
Comment From siovhan

WHAT can we expect fromt he RED STATES

8:42
Siovhan:
What we hope for from the red states are strong autism insurance reform laws. The red designates states where Autism Speaks has endorsed their legislation as strong bills. We work closely with local advocacy groups to help them become law.
8:44
Comment From Julie

I’m in Illinois and am looking for additional insight into what coverage I can get from my employer. Self funded, and this industry lingo is confusing!

8:44
Comment From Shelle

My son is 10. He has Aspergers with sensory integretion issues. His insurance paid for an eval for therapy, but refuse to pay for the actual therapy. We live in Michigan and I am at a loss as to what other steps to take.

8:44
Hi Shelle — I wish I could give you better news, but Michigan is one of the 21 states that do not yet have autism insurance laws. The best thing I can advise right now is show up for the hearing in Lansing this Thursday at 1:00! Or at least write your legislators to tell them how much you need this coverage. I promise that every single letter does make a difference, and we are really on the verge of getting this law passed in Michigan!!!
8:47
Hi Julie. You are right – it is very confusing. Please take a look at http://www.kff.org/insurance/upload/7766.pdf. Page 3 explains what “self funded” insurance means. For details on how you can convince your employer to add coverage, check outhttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5216011/k.1245/Selfinsured_Companies_and_Autism_Coverage.htmIf you would like someone from the Autism Speaks Government Affairs team to accompany you please contact us atadvocacy@autismvotes.org
8:47
Comment From Dianne

Can you post additional resources or links that we can refer to once this chat concludes? State specific (writing from MA)

8:47
Diane and to our many other friends:
Yes, we have been collecting all of your questions and comments. We will try to follow up on as many of them as possible. Watch www.autismvotes.org in the days ahead.
8:48
Comment From Jen

I am in Mass where we just passed the ARICA law. We are having trouble finding 3rd party billers qualified to oversee in-home therapy. Our insurance company (united) says they will provide up to 8 hours per day…but because they are Sierra health, my x lives in vegas, then they say they will only obey Nevada law, not Mass. yeah…is that true?? I think it sounds illegal. And, can’t we find our own 3rd party to contract with them, since none of their providers are taking patients or in our area???

8:48
Hi Jen from Mass — Different states respond differently to residents who have insurance in another state. Some states insist that insurers follow the law where the patient lives; others do not. At any rate, even if your insurer is in Nevada and following Nevada law (where there is an autism mandate), they still have to provide you access to a provider in Mass! Tell your child’s provider to work out a one-time contract with the insurance company in Nevada. Insurers do that all the time to serve one patient in another state. Good luck!
8:51
Comment From Heather

Our doctor has recommended ABA therapy for our 2 year old. Our insurance has denied coverage. We have submitted an appeal. The insurance is Empire BCBS of New York. We heard that New York passed a law to require insurance carriers to provide ABA Therapy. But that doesn’t take into affect until November of this year. What can we do if they deny us again?

8:51
Heather from NY — What was the basis for the denial? I would keep appealing and perhaps let the NY Dept of Insurance know about this. But you may be out of luck for services that took place prior to the new autism insurance law in NY. It stinks, but that’s the sad truth. And it’s why we’re working so hard to pass these laws in all 50 states as fast as we can! (But please do go back and find out what was the basis for the denial; make sure it wasnt a coding error or somethign stupid like that.) Also, do you have coverage through your state’s early intervention program untill your child turns 3?
8:52
Comment From Guest

Medicaid and private insurance- can a child with autism have both of them? Thank you

8:52
Comment From Norah

Do you have a sample letter in how to write to our legislator? we live in Geogia

8:52
Norah:As we gear up our state advocacy campaigns, we provide you with emails that can be sent to specific legislators at specific points through the legislative process. This occurs once bills are introduced, are endorsed by Autism Speaks and then work their way through the legislative process. As the legislation in Georgia evolves, stay posted to www.autismvotes.org/Georgia for guidance.
8:53
If your child qualifies for Medicaid on the basis of his disability rather than his income (or lack thereof), then your child can have Medicaid and private health insurance. Qualification on the basis of disability is permitted in most but not all states; it’s usually called TEFRA or the Katie Beckett waiver.
8:53
Comment From Laura

I am in Charlotte and I believe NC is one of the states not behind the autism leg, what would you do?

8:55
Laura — Please contact your legislators and tell them NC needs the autism insurance bill to pass this year! I have met with your Speaker of the House twice in recent months and gotten good traction, so I’m optimistic we will see legislation there soon (but not soon enough for children who need coverage now!) I will be in Winston-Salem this Friday to meet with more legislators on this issue. Come join me! Or at least write your legislators. Thanks!
8:55
Comment From Larisa

and another question – our son was able to take part in a summer program at the VA Institute for Autism – mainly personal and social skills development….would there have been any course of action that could have gotten this paid for by insurance??

8:56
Larisa — It is possible. I’m not sure if VIA is there yet, but insurance coverage may be possible there. Check with Ethan Long; he is up on all this stuff. Good luck!
8:56
Comment From Mirella

I had a question from a mom in Florida who’s son is on his father’s insurance policy out of Utah. It is a state regulated plan. The son lives with his mom in Florida. The father lives in Utah. How do they find out which state laws apply to their son’s coverage.

8:57
Mirella — Write to us offline; I have a chart that shows which states apply their own laws versus other state’s laws to their residents. L. :-)
8:57
Comment From janet

I live in NY single mom of three children with autism ages 4, 5, 6…..ABA work very well for them yet insurance company refuse to cover services that are needed…….WHY! WHY! WHY! help please

8:57
Comment From Guest

In Alabama, I know they are fighting for a bill. However, nothing

8:58
Janet — The NY autism insurance law that passed last year goes into effect later this year. You should see some relief then!!! It’s why we work so hard to pass these laws. Good luck!!!
8:58
Comment From Jennifer

I’m in TN and advocates here don’t seem interested in pushing for state mandated insurance coverage for ABA. They had tried in 2009 but have not done anything since. Now, even with other states moving toward mandated coverage, advocates in TN are telling us we should now wait for Health and Human Services to determine what will be “essential care” under the new health care reform. Do you have any news on federal mandates for us, or could you please help me figure out how to get started in my state?

8:58
Hi Alabama folks! Please join the effort atwww.autismvotes.org/alabama
8:58
Jennifer — Please write to us at advocacy@autismvotes.org. We would love to help in Tennessee.
8:59
Comment From Juan

Hello Lori! What is considered a self funded company?

8:59
Juan — A self-funded a company pools their own money together to pay claims rather than contracting the risk to an insurance company. The only way to know whether your insurance is self-funded is to ask the HR department at your employer.
9:04
Hi Everyone — Well, it’s after 9:00, and we got flooded with questions! I’m sorry that we could not answer more. I typed as fast as my fingers would let me! We will try to follow up on some of these excellent questions on our website –www.autismvotes.org. Please check there in coming days. And given the barrage of questions, I’m sure we’ll be doing another webchat soon. Also please sign up at www.autismvotes.org to stay on top of the latest developments. We post information on state autism insurance reform efforts there, and we post resources for families who have self-funded plans.
Thank you all for participating tonight, and good luck!
Lorri Unumb :-)
9:04
Comment From Guest

Thanks Lorrie for all you do and thanks to your family for supporting you while you are gone so much to fight for ours! Just had to say that!

9:05
Thank you, 9:00 guest. I will pass that along to my husband who is at home trying to get our 3 children into bed right now!!! :-)

Collaborating in South-East Europe

February 28, 2012 2 comments

Posted by Simon Wallace, Ph.D. Autism Speaks director of scientific development for Europe.

In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).

Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:

  • Raise public and professional awareness in the region
  • Provide information resources for parents and professionals
  • Collect public health data on the locations of individuals with autism
  • Conduct professional training in the areas of diagnosis, clinical management and early intervention
  • Provide evidence-based services for both children and adults
  • Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism

Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.

Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.

Local organizer Marta Macedoni, M.D., Ph.D. and international technical advisor Connie Kasari, Ph.D., from UCLA at the first official meeting of the South-East European Autism Network in Slovenia.

Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.

The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.

The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.

In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.

The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.

The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.

SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.

Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.

What behavioral therapies can help someone with autism and severe anxiety?

February 24, 2012 36 comments

Today’s “Got Questions?” answer comes from clinical psychologist Jeffrey Wood, Ph.D., of the Center for Autism Research and Treatment at the University of California, Los Angeles. The recipient of three Autism Speaks grants, Wood has extensively studied anxiety in elementary school and adolescent children with autism.

Anxiety is common among children and adults with autism spectrum disorder (ASD). Research suggests that at least 30 percent of children withASDalso have an anxiety disorder such as social phobia, separation anxiety, excessive worry/rumination, obsessive compulsive disorder or a phobia such as extreme fear of spiders or loud noise. Indeed, many of the children involved in our ASD research suffer multiple anxiety disorders.

It’s important to remember that anxiety can range from fluctuating, mild and completely understandable to unremitting, severe and irrational. Most people experience some form of anxiety on a regular basis, and this generally involves some degree of physical discomfort as well as negative mood.

Moderate levels of anxiety can actually be a positive, motivating force to increase one’s level of effort and attention when working or socializing.  However, research on how children adapt to different settings (academic, athletic, social, etc.) suggests that high levels of anxiety can interfere with academic and social success.

Several types of cognitive behavioral therapy (CBT) have been developed to address anxiety in children with ASD, with promising results from several clinical research centers. Techniques include challenging negative thoughts with logic, role-play and modeling courageous behavior, and hierarchical (step by step) exposure to feared situations.

We and others have developed programs using modified versions of CBT that was originally developed for typically developing youth. These directly address problematic levels of anxiety in children with ASD. Several of these programs incorporate “special interests” to motivate children to engage in treatment activities during weekly sessions. For example, the therapist may use favorite cartoon characters to model coping skills, or intersperse conversations about a child’s special interests throughout the treatment sessions to promote motivation and engagement.

Depending on the program, these treatment sessions usually last 60 to 90 minutes each and extend over a course of 6 to 16 weeks. Most treatment plans also require parent involvement and weekly homework assignments.

Results from our randomized clinical trial, case studies and related reports indicate that most children with ASD who complete such programs experience significant improvements in anxiety as well as some improvement in social communication skills and other daily living skills. 1-9

We and others continue to conduct research on these and related behavioral interventions for relieving anxiety. At present these intensive and scientifically studied treatment programs are available primarily at a small number of autism treatment centers. We hope that further research and dissemination efforts will make them become more accessible to families throughout North America and elsewhere.

References:
1. Wood JJ, Gadow KD. Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clinical Psychology: Research and Practice. (In press)
2. Wood JJ, Drahota A, Sze K, Har K, Chiu A, Langer DA. Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial. Journal of Child Psychology and Psychiatry. 2009;50(3):224-34.
3. Sze KM, Wood JJ. Enhancing CBT for the treatment of autism spectrum disorders and concurrent anxiety: a case study. Behavioral and Cognitive Psychotherapy. 2008;36:403-9.
4. Chalfant AM, Rapee R, Carroll L. Treating anxiety disorders in children with high functioning autism spectrum disorders: a controlled trial. Journal of Autism and Developmental Disorders. 2007;37(10):1842-57.
5. Lang R, Regester A, Lauderdale S, Ashbaugh K, Haring S. Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation. 2010;13(1):53-63.
6. Reaven JA, Hepburn SL, Ross RG. Use of the ADOS and ADI-R in children with psychosis: importance of clinical judgment. Clinical Child Psychology and Psychiatry. 2008;13(1):81-94.
7. Scarpa A, Reyes NM. Improving emotion regulation with CBT in young children with high functioning autism spectrum disorders: a pilot study. Behavioural and Cognitive Psychotherapy. 2011;39(4):495-500.
8. White SW, Albano AM, Johnson CR, et al. Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism. Clinical Child and Family Psychology Review. 2010;13(1):77-90.
9. Sofronoff K, Attwood T, Hinton S. A randomized controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatiry. 2005;46(11):1152-60.

Read more autism research news and perspective on the science page.

Autism Journal Offers New Podcast on Gender Differences

February 22, 2012 Leave a comment

ImageThe international journal Autism released a new podcast in its Autism Matters series. Sven Bölte, Ph.D., director of Sweden’s Karolinska Institute Center for Neurodevelopmental Disorders, discusses his research on gender differences in cognitive function among high-functioning persons with autism spectrum disorder. Autism Matters podcasts are hosted by University of London psychologist Laura Crane, Ph.D.

The series is designed for a broad audience and aims to showcase the latest research published in the journal with an emphasis on real-world relevance.

Lorri Unumb to Host “My Child Has Autism: How Do I Get Insurance?” Webchat

February 22, 2012 19 comments

Please join us Monday February 27th for our first webchat featuring the Government Relations team: “My Child Has Autism: How Do I Get Insurance?” The webchat will be hosted by Lorri Unumb, Esq., our Vice President for State Government Affairs.

Held at 8 p.m. Eastern (7 Central/6 Mountain/5 Pacific), this “office hour” will connect families looking for answers about their health insurance with Ms. Unumb, who is regarded as one of the nation’s pre-eminent experts on health insurance and coverage for the diagnosis and treatment of autism. Ms. Unumb wrote groundbreaking autism insurance reform legislation enacted in her home state of South Carolina in 2007 and has since led the way for the enactment of similar laws in 27 other states. Her most recent honor was the 2012 Leadership in Advocacy Award presented by the California Association for Behavior Analysis.

Ms. Unumb welcomes your questions about how autism insurance coverage works in your state, understanding self-insured policies and the impact of the new federal health care law on autism coverage. However, the guidance provided on the webchat is not meant to substitute for the information provided by your employer’s human resources department, your insurance agent or attorney.

Autism Speaks Kicks off “Light It Up Blue”

February 22, 2012 23 comments

In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.

Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.

Check out LightItUpBlue.org to register your events and see a full list of participating buildings.

Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!

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