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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!!! :-)

Somebody Stole My Name! (but we’re friends now)

January 26, 2012 2 comments

This is a post by Dr. Scott Standifer, a Clinical Assistant Professor for the Disability Policy & Studies office (DPS) at the University of Missouri. He is the author of Adult Autism & Employment: A guide for vocational rehabilitation professionals, and the organizer of the Autism Works National Conference, March 6 & 7, 2012 in St. Louis, MO.

The first call came in 2008, just after I started work on the first Autism Works National Conference: “Hi Scott, this is Tracey with Autism Works…” the woman said.  “But, wait,” I thought, “That is MY project’s name…” Actually, I don’t have a copyright on the name, so it is legal for others to use it too. Still, it felt likeTracy stole my name.

Since then, I’ve had that same “Somebody stole my name!” feeling twice more as I discovered other groups with the same name. Who these groups are, and what we are each doing to advance autism employment, is a nice sample of some of the varied and vibrant approaches to this important field. Tracey, for instance, turned out to work for Community Gatepath, a Community Rehabilitation Provider (CRP) in California that had been given a grant for a special program serving adults with autism. They called it Autism Works.

A few years earlier, as part of my job helping state vocational rehabilitation agencies in four Midwestern states, I had discovered a profound lack of information about autism in the vocational rehabilitation community, and a similar lack of information about vocational rehab in the autism community. I ended up writing a reference guide on autism employment and starting the Autism Works National Conference.

Six months later, I found another Autism Works, this time in Minnesota. This one is a non-profit group that promotes not only employment, but also life planning and independent living for adults with autism. It was founded by Melissa Kenig-Davis, the parent of a young adult with Asperger’s Syndrome. Parent advocates are an important group in autism employment. They have started some of the most exciting autism employment projects in corporate America, including Randy Lewis at Walgreens and Heather Davis at TIAA-CREF. In Connecticut, parent Jim Lyman started Roses for Autism. In Missouri, parent Kate Duffy teaches job-seeking-skills courses for autism and has co-written a book on employment withTempleGrandin. Heather Davis, Kate Duffy, and Melissa Kenig-Davis were all at our 2011 conference.

And then it happened again – last summer, I found a group called Autism Works UK.  Peter MacDonald is the Director of Autism Works UK, which is part of a business movement spearheaded in the U.S. by Aspiritech in Chicago. These businesses hire adults with Asperger’s Syndrome to test computer software. Apparently, when innovative programmers finish their software masterpieces, they often don’t feel like going back to recheck every function and explore every possible input for mistakes. So they hire software testers. For us neurotypicals, software testing can be terribly boring; it requires lots of repetition, documentation, endless lists, etc. But for Aspies, routinized work like this is often appealing and easy. Aspiritech and Autism Works UK don’t market their services by pleading, “Please help these poor young people.” Instead they say, “Our unique workers do a better job than anyone else.” WOW! What an empowering message!

Peter MacDonald and I had a long talk about the challenges and opportunities of this exciting business model. Peter, Aspiritech, and folks from three similar companies will be on a panel at our Autism Works National Conference in March.

So even though each of our groups picked the same name, we are all engaged in different and complementary projects. Discovering these other Autism Works has taught me interesting new things about career options for adults with autism.

Lately I’ve had the feeling that somewhere, someone else is getting ready to choose the Autism Works name for some new kind of employment project. I can hardly wait.

The Month in Review: Autism Speaks November 2011 Impact

December 1, 2011 Leave a comment

Happy Thanksgiving and Happy Holidays to you and your family! This past month has been a whirlwind of activity here at Autism Speaks and we wanted take the opportunity to give thanks to the many collaborators who work with Autism Speaks in a variety of ways; from content partners to research providers to corporate sponsors and marketplace vendors – you all help us every day accomplish our vision and mission. Thank you from the bottom of our hearts and from the Autism Speaks staff and board.

Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.

One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!

“When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.”

Have a wonderful holiday season with your family!

Science

Autism Speaks in Shanghai

  • To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.
  • Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.
  • Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Enzo’s mom talks insurance

  • Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
    • The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
    • Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.
  • Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
  • Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at familyservices@autismspeaks.org.

Advocacy

Autism Law Summit

  • A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.
  • Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

  • New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.
  • Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.
  • Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

The Month in Review: Autism Speaks September 2011 Impact

October 4, 2011 6 comments

One of the big challenges we have as an organization is showing the impact we have  across the four pillars of our mission: Science, Family Services, Advocacy and Awareness. In fact, so much is going on that we are going to aggregate some of the most important happenings once a month.

If you know of things going on that we aren’t including, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Autism Speaks

  • Science Pressents… We presented ATN-supported research on autism and attention deficit and hyperactivity disorder (ADHD) at the annual conference of The Society for Developmental and Behavioral Pediatrics. The study’s findings – that ADHD symptoms ADHD Symptoms in children with autism are common, problematic and likely undertreated – made national headlines.
  • European Approval On September 13, we received final approval of the European Union Autism Innovative Medicine Initiative (EU-AIMS, a historic Autism Speaks-European Union collaboration to develop new medicines for the treatment of autism. The largest public private partnership of its kind in Europe, EU-AIMS will allow Autism Speaks to establish an international biorepository for research and to integrate our wealth of clinical information with global databases.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Download the new Grandparents tool kit from Autism Speaks

Download the new Grandparents tool kit from Autism Speaks

  • Just for Grandparents We launched our Family Support Tool Kit for Grandparents on September 15.  The kit includes topics like:
    • Reaction to the Diagnosis
    • Your role as a Grandparent
    • Support for Your Grandchild
    • Support for Your Family
    • Taking Care of Yourself
    • FAQs from Grandparents
    • Grandparent Stories
  • New Health and Wellness toolkit launched On September 29 we launched a new on-line tool kit called Health and Wellness. This new content is featured on the Autism Speaks website and includes the benefits of exercise for people with autism as well as information about nutrition and sleep.  The photographs used in the slide show were submitted from our Facebook community members! Send us more!!
  • Family Services Committee Meeting On September 15 and 16 the Family Services Committee met to review the top scoring applications for the Family Services Community Grants.  The committee looked for applications that increase the services for people with autism, as well as to expand the field of service providers.  Other factors considered during the review process were innovation and creativity, ability to address the needs of the underserved, replicability, clarity of the proposal, qualifications of the organization, well documented budget and sustainability. As a result of this meeting recommendations will be made to the Autism Speaks board of directors for approval during the December board meeting.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

The White House

The White House

  • Autism Speaks joined with California Senate President Pro-Tem Darrell Steinberg at a series of rallies urging Gov. Jerry Brown to sign an autism insurance reform bill into law. The effort received a boost in late September when the Los Angeles Times urged the Governor to sign the bill in an editorial
  • Michigan has become the primary target for autism insurance reform as a new legislative campaign gears up to enact a bill into law

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Autism Speaks World Focus

Autism Speaks World Focus

  • Hacking Autism As part of a collaboration on the “Hacking Autism” initiative with HP and the Flutie Foundation, Autism Speaks participated in the World Maker Faire at the New York Hall of Science on September 17 and 18. “Hacking Autism” was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. At Maker Faire, seven app ideas were announced as finalists to be built by volunteer software developers at the HP Hackathon in October. In addition announcing the “Hacking Autism” finalists, Autism Speaks used the popular tech convention as a platform to disseminate information about its mission and raise autism awareness. Catch up by reading our blog post on Collaboration, technology and making things.
  • Parents Magazine “Wishes” Autism Speaks worked with Parents to develop a “wish” for autism that we would like to see come through within the next decade that will be featured in the October issue of the magazine. On September 15, Autism Speaks and Parents both posted the wish – that every child is screened early for autism – on their social networking sites and asked families to share their wish for autism.
  • World Focus on Autism For the fourth year in a row Autism Speaks brought together more than 20 first spouses and esteemed dignitaries, including 15 ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event was held on September 20at The McCarton School in New York City. We encouraged those in attendance to support our international efforts, including Autism Speaks’ Light It Up Blue campaign in celebration of World Autism Awareness Day, and our Global Autism Public Health (GAPH) initiative. This annual breakfast event, supported by Mrs. Ban Soon-taek, wife of United Nations Secretary-General Ban Ki-moon, is part of Autism Speaks’ ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with autism. See an article highlighting the event published in the Wall Street Journal here.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Transcript of LIVE Q & A with Gary Mayerson

August 18, 2011 21 comments

How To Compromise With Your School District Without Compromising Your Child

Navigating the IEP process can be an overwhelming experience. Join nationally renowned attorney Gary Mayerson as he answers live questions from parents and explains what parents can do to secure effective and appropriate programming.

Gary Mayerson is the founder of Mayerson & Associates, a law firm in Manhattan that was formed more than a decade ago as the very first law firm dedicated exclusively to serving people with autism. To date, Mr. Mayerson and other lawyers at his firm have helped more than 1,000 families in more than 30 states, as well as military families stationed abroad. He also is the author of How To Compromise With Your School District Without Compromising Your Child (DRL Books 2005). In addition, Mr. Mayerson is a long-time board member of Autism Speaks and serves as the Director of the Autism Speaks Federal Legal Appeals Project, a pro bono initiative at the federal level.

6:49
Hi all……I am going to be answering parents questions……..this is back to school time and there is quite a bit of anxiety as to how this year is going to go…..
6:52
Comment From TannersDad Tim 

When A school system decides it can no longer handle your child, how do you evaluate the place they want to send them?

6:53
Many parents have good results bringing in a behavior analyst or educational consultant to go into the recommended school
6:54
Parents have the right to assess the recommended placement, just as schools have the right to assess the student….this can be initially agreed to at the IEP meeting
6:55
Comment From Guest 

My little brother is starting preschool and he has PDD-NOS and we went to orination and he does not want to go. What do we do?

6:56
Transition planning is something that comes in handy, to create greater predictability…..but I am a lawyer, not a behavior analyst…..so this is something that really can be plotted out with the assistance of a behavior or educational consultant…
6:57
Comment From Guest 

I live in small village, my AS son is failing math and needs a tutor, i understand that the school district can/should help pay expenses, how do i encourage that to happen?

6:58
If you live in a small village….your school district is not likely to be unduly burdened with this kind of request. Your first move is an objective assessment to ascertain the extent of the “damage,” and then present the results at an IEP meeting to make the request…..
6:59
Comment From Kendalls Mom 

What happens if the school feels your child has no need for an IEP anymore? But you still think they do?

7:00
This is a recurring problem…..initially, such a move MUST be based on objective criteria…..and if you disagree and file for due process, “stay put” will protect your child in their current placement until the judge rules otherwise…
7:00
Comment From Katy 

I live in Wisconsin, where there’s massive school budget cuts. I’m concerned that it will affect the services my 3rd grader receives. Do we have legal rights to push for the same level of service, or must we accept whatever’s coming?

7:02
Budget cuts across the nation are creating fear and apprehension, and there are real budgetary realities that school districts–all districts–must contend with. On the other hand, the district cannot simply slash your IEP services because of budgetary concerns and if any IEP proposes to do so, again, “stay put” comes to the proteection of the parents who have no choice but to move formally to protect their child’s program components
7:03
Comment From Carol 

we have a 6 year old child who is not currently diagnosed with autism, but the believes the with the behaviors and patterns that he exhibits that he has aspergers. Who responsibility is it to get the testing done?

7:04
You first must REFER your child to the school distrrict for an evaluation to determine eligibility under one or more of the classification categories…and if you do not agree with the districts assessment, you can request an independent eval at district expense
7:04
Comment From Karla 

Our son turns three in November and we would like to know whether it is best , from a legal stand point, to send him to a public school first and then try to get him into a private school or not send him at all and fight the school district to send him to a private school?

7:06
This really turns on the outcome of the IEP meeting. IF the school district is offering a classroom or program that appears to be an effective to meet the child’s needs, then by all means, sign me up!! On the other hand, if it appears to be clearly inadequate, you would be moving in the other direction.
7:06
Comment From Es Mom 

I have a severly autistic son that I wanted to place in a special needs school. I have noticed that there is an extreme push by the public school for him to go there instead. Is there a reason for this? Do I not have a say?

7:07
The public school has an obligation to at least try to place your child in a public school placement before looking to private situations. You do have a say, but you need to first consider, in good faith, the public school options that are presented
7:08
Comment From Linda 

I would like to know the best way to present the need for a 1:1 aide for your child. My child bolts and is very fast. I have agreed to 2:1

7:09
A child who bolts and who is fast is a potential danger that could expose the district to potential liability. This year, we had a case of a student who bolted out of a NYC school, and was found undressing by the East River. It should not have to get that level of danger. How often does your child bolt? Is there a bheavior plan in place? These are all questions to be discussed at the IEP
7:10
Comment From Melissa in Michigan 

What is “stay put”?

7:11
Stay put is a simple description of a far more complicated statutory provision which simply means that if you bring a due process and challenge your child’s IEP, you are entitled to “stay put” in the last AGREED placement……
7:11
Comment From Jane 

Our high school contracts out for Occupational therapy for my son…what can I do to assure that he gets the service due to him, as I know that they have “skimped” on his IEP mandated time in the past?

7:12
You can test the situation by asking for service records or “session notes”….all parents are entitled to their child’s educational records…..and if there is a problem, call an IEP meeting and make sure to invite the questionable provider(s)
7:13
Comment From Mitchells Mom 

Can you request that a 504 be terminated and a IEP be initiated, if you feel that a 504 is not the appropriate measure? I don’t won’t to seem too pushy, causing the teachers to be biased towards my student.

7:14
Get pushy! Many school districts will try to give a 504 rather than an IEP because they know that it will likely be less burdensome to perform…..there is no dishonor in an IEP…..which often is exactly what the student needs (understanding that many children do just fine with “only” a 504 plan)
7:15
Comment From Meg 

What can I do if my child’s IEP is not being followed?

7:16
School districts hate having to assemble lots of teachers and administrators for an IEP….if they are not following the IEP, the “cost” is that you will demand a further meeting…eventually, most districts will ensure basic compliance rather than have to deal with your IEP requests
7:16
Comment From Melissa in Michigan 

do you have a web page?

7:16
Yes…..mayerslaw.com
7:17
Comment From Guest 

if my sons IEP has special instructions on transportation; can tthe school district who has now leased out their bussing to a private company refuse the IEP instructions to drop off and pick up curb to curb and make my child wait at a bus stop?

7:18
No….the school district MUST comply with the IEP mandates….and they cannot delegate their legal responsibility for compliance, even if they subcontract with another company
7:18
Comment From Andrew 

My daughter gets speech therapy for 30 mins a day in school and everytime that I ask if we can up the therapy, the response I get is, “30 minutes is enough, any more than that would be too much for her to absorb” How do I get them to at least try increasing her therapy time?

7:19
Particularly for children with autism who are often highly distractible, a 30 minute session is not adequate. You may need a private evaluation to measure this problem, and to make recomendations you can then present to the district
7:19
Comment From Karla 

Do you recommend that we bring a mediator or an attorney to our son’s IEP meeting?

7:20
I think that often, this is NOT a good thing to do unless prior statements by the school district alert you to hostility or closemindedness…..I think parents should first TRY to speak openly without attorney or mediator assistance….
7:22
Comment From melissa 

can you have a 504 and a iep also

7:22
You can technically wear a belt and suspenders too but one of them is not needed
7:23
Comment From Brittnii 

ED kids, what can i do to help so my child isnt teased?

7:24
Bullying has now become a huge issue for school districts, who are beginning to implement zero tolerance policies. More importantly, we just got a federal court decision this year that confirms that bullying is a big violation under IDEA
7:24
Comment From Guest 

Any suggestions to keep the IEP process collaborative rther than confrontational? My daughter sometimes feels overwhelmed by the “experts.”

7:26
This may sound silly, but many parents quiet the waters from the outset by bringing in cookies or something else to the meeting. It is difficult to disagree without becoming disagreeable. Peoples egos often get in the way. I also think that if you present an expert report, the dynamic changes from “this is what the parents want” to “this is what an expert is recommending”
7:26
Comment From Erika 

My daughter is starting middleschool and has inclass support mainstream, i also am wondering if theres any advice on her bullys, how to prepare teens for staying away from peer pressured things when there so volnerable, is there a book or any advice you can give us on tackling this cause this worrys me.

7:27
There is a link on my website, mayerslaw.com, to this year’s landmark bullying decision, which offers a lot of guidance as to what parents and school districts should do
7:28
Comment From Shell 

I have the same issue with ‘budget cuts’. My son has lost an excellent autism teacher and I am afraid that he will lose the 1 on 1 that he used to get. Should I address my concerns to the school or go straight to BOE w/ other parents? Thx

7:29
I would address it initially with the school and telegraph that such a move would not be acceptable and that if that were to occur, you would take action. You might well get a reassurance, as the squeaky wheel often gets the grease
7:29
Comment From Leslie G 

Children in NYS Early Intervention despite their diagnoses are receiving service authorizations that are ridiculous and similar eg. 1X60 every other week or 1X30 every other week. The service authorizations are not individualized. What can families do collectively to fight this?

7:30
Under Early Intervention, which goes only to age 3, a parent may get a lot of mileage going straight to mediation……
7:30
Comment From guest 

do kids with autism get their ears pierced????

7:31
I don;t have a clue. My daughters are the experts in our house about ear piercing
7:31
Comment From Katy 

What can you do if you do not want a particular staff member working with your child? (if you have only one example to demonstrate this person’s poor ability to adequately work with your child and you just have a “gut” feeling)

7:32
This is the weakest leg, often, that parents have to stand on. Personnel decisions are very much left up to the school district unless you can show true incompetence or worse conduct……
7:32
Comment From Guest 

Who is legally required to be at an IEP meeting?

7:34
This will differ slightly from state to state, but usually there is at least a district rep, a special education teacher, and evaluators, and if your child is attending or is being considered for regular education participation, a regular education teacher
7:34
Comment From Guest 

Good evening Mr. Mayerson. Wanted to stop im just to applaud everything your firm does to promote and protect autistic children. We have moved our 11 year old from public school to a private school that deals exclusively with autistic children through the age of 22. And thanks to the McKay scholarship, it’s free. We were so afraid of him being bullied in middle school.

7:35
Thank you for your kind words……and I am glad that your child is now in a good place
7:36
Comment From Guest 

If I’m not agree with an IEP meeting decision about related services, should I sign any paperwork?

7:36
You always should sign the “attendance” page of an IEP, but if you are not in agreement about related services, you should so indicate and communicate…..otherwise, the inadequate service levels will commence…
7:37
Comment From Mia 

When are services required to start under an IEP? I assume on the date the IEP states (the first day of school), but our district always takes a few weeks to get the schedule done and it can take 2-3 weeks until services actually begin. What can a parent do?

7:37
Each IEP is required to specifiy the start date and end date….to give parents notice of how to plan
7:38
Mia…you should write to the district and request the schedule weeks before the start of school….and I know that I just gave you impractical advice considering the time of year!
7:39
Comment From MB 

How can you address behavioral issues in an IEP? My son is currently screaming and yelling which I feel is his current way of stemming, but the teacher feels it isn’t related to Autism?

7:40
I am going to stick my neck out, but your child would appear to require a Functional Behavior Assessment to determine the function of his behavior(s). This should not be the subject of conjecture or guesswork
7:41
Comment From keli 

what is a Functional Behavior Assessment?

7:42
An FBA identifies the target behaviors, tracks and measures the frequency, duration and antecedents of those behaviors, and then, finally, hypothesizes as to the likely function of the target behaviors…and you need to know wjhat the function is before you can develop and design a proper behavior intervention plan
7:43
Comment From Maria 

Is it possible on IEP meeting to request bilingual paraprofessional or ESL services for autistic kid?

7:43
Maria……seguro!
7:44
Seriously, it is not only possible, but often required….depending on the unique needs of the student.
7:44
Comment From Melissa 

Thid is my 3rd time writing this but its not going through I assume. I have a problem with my sons teacher. He is 4 and has Autism. She would only speak with me if he had a problem at school. She feels that he needs a behaviorlist which we do not have in our area that knows how to work with Autistic children. What should I do?

7:45
Ask the teacher if she feels comfortable shareing that with the district and if so, I would call an IEP and get this problem on the table
7:46
Comment From MJ 

I am a special education teacher and have several children with autism that I serve. I am sad to read about parents not feeling like they are getting adequate services or that their schools look at their children as burdens. Not all schools/districts are this way. We welcome parent input and do the very best we can with the resources available to meet each student’s needs.

7:48
Thank you for the fine work that you do. Dont be sad. Parents cannot move their children forward having a party that celebrates only all the wonderful things. Parents know that they have to move the mountains that are standing in the way of their chilldren’s progress. This is nothing personal….but a reality that all parents face. We have worked with many fine and honorable school districts that will always do the right thing…..but that is the question all parents must ask. “ARe you a good witch or a bad witch.”??
7:49
Comment From Bryce`s Mom 

Going into a IEP meeting is stressful enough but how about when my Son`s Dad brings a girlfriend in with him that has been nothing but hateful toward my son and more than I can say on here but it makes it twice as uncomfortable? …school claims there is nothing they can do? Thank you for any suggestions :}

7:50
I hear you. Unfortunately, either parent has the right to bring anyone they wish to the IEP, unless that person becomes disruptive at the meeting. That often helps parenets who bring advocates, experts, but works less well when your ex brings their baggage.
7:51
Comment From Guest 

How do the rules change for Autistic students starting college? Do colleges have to provide the student with all of the services that they had while in k-12?

7:53
This is a thorny issue but it normally is not an IDEA issue as much as an ADA issue……however, in the last few years, we are seeing many colleges and universities promoting special serrvices supports for students who need extra assistance…..its not the stigma it once was and colleges recognize that 13% of the population will have some form of disability to contend with…..
7:53
Comment From Cate Borzi 

How do I get ABA services in a region of Illinois that is still fighting tooth and nail to avoid schools here providing it?

7:55
Cate……this is less of a problem now, but obviously still of concern. If I can get ABA to come to a remote stretch of Alaska, you have a shot to import it to Illinoise. Check out the T.H. v. Palatine case, from your jurisdiction, that we won in 1998 and which supports ABA programming
7:55
Comment From PB 

Speaking of resources, are there ANY rules, (laws) about case load, number of students and the intensity of each student’s needs?

7:56
The IEP ratio limits the number of students, and some professional organizations, such as ASHA (for speech pathologists) publish caseload limits….
7:56
Comment From Lisa 

My daughter is 5. Does a school district always offer the bare minimum that is doesn’t remotely address the child’s needs to learn but just warehouses them in a large class with no support? It seems that is all they are willing to do and when I object, they say the environment is “least restrictive” because it is the closest Special needs primary class to our home.

7:58
It’s not even the “bare minimum” if the services are inadequate to create meaningful progress. The problem is assessing whether your daughter is meaningfull progressing or not.
7:58
Comment From Imelda Donato 

I moved to a different school district while my son’s old IEP was in place. The new district has decrease speech services by 50% and when I told them what was needed according to the IEP, I was told that “that” document is no longer legal. What can I do?

7:59
If you moved to another district within the same state, you have “stay put” rights to the services in the old IEP that you can invoke by filing for due process, assuming that the move was very recent.
8:01
Comment From Karen 

Can I use meaningful progress in regard to behavior issues or is this relevant only to academic progress?

8:02
It is BOTH, particularly if your child has interfering behaviors that, when occurring, are making your child unavailable for learning.
8:03
I want to thank everyone for throwing me some very interesting questions….questions that come up time and again. I hope that everyone has a great start for the 2011-2012 school year…..good luck!!

Training Staff in Community Programs

July 18, 2011 3 comments

As a result of increased awareness about autism and strong family advocacy many more people with autism are attending community-based summer programs.  An important ingredient to a successful experience is the staff at the community program, their understanding of autism spectrum disorders, and the unique strengths and challenges of your family member with autism.  How have you shared this information with agencies  or  community program staff?  Do you use a formal training program?  A written document?  One-on-one time with the staff?  Share your experience and make it easier for others going into new community settings this summer.

The Latson Case in Virginia: A Danger Signal That We Can’t Ignore

May 27, 2011 57 comments

Teresa Champion is an attorney admitted to the bar in Kentucky and Washington State.   She has two children; Sydney and James, who has a diagnosis of autism.  She is a long time civic and community activist, who works with the Fairfax Autism Network (FAN) and the Virginia Ability Alliance (VAA). Champion is a member of the Council of Parent Attorneys and Advocates (COPAA). Currently, Teresa is volunteering for the Virginia Autism Project (VAP) as the Northern Virginia Regional Director.  

The Cry for Help:

I sat in the courtroom and sobbed.  I had never met this young man and I had just met his mother in person that morning.  Even though we were essentially strangers, I viscerally felt the anxiety and fear of this family.  Reginald “Neli” Latson has Asperger’s Syndrome, an Autism Spectrum Disorder (ASD) and was on trial for injuring a school resource officer.  I too have an 18-year old son with autism.

The evidence showed that Neli, in resisting arrest, had severely injured the officer, but only after an interchange that magnified his inability to process verbal input and significantly increased his sense of uncertainty and apprehension.  The officer had been alerted to look for an African American teenage male carrying a gun.  Neli had been sitting waiting for the library to open.  He had no gun.  Although initially cooperative when the officer approached him, Neli stopped cooperating when the police officer asked him for his name.  He had done nothing wrong.  The “rule,” he knew, was that police officers went after people who had done something wrong.  Since Neli knew he had not done anything wrong, to his concrete way of thinking, he didn’t need to obey the police officer.  So he didn’t comply with the police officer’s request that he identify himself and attempted to leave the scene.  It is undisputed that Neli did not possess a gun or any other weapon.  Until he encountered the officer, he had committed no crime.  The basis for the arrest was a county ordinance that makes it a crime to refuse to identify yourself in response to a request from a law enforcement officer.

Neli was found guilty of charges associated with an assault and the jury recommended a sentence of 10 ½ years.  In Virginia, the jury recommends a sentence and the judge imposes the sentence at a later date.  In Virginia, there is no parole.  He will serve every day of whatever sentence he is given.

Many ASD families who read about this case thought, “that could be my son/daughter.”  If the autism community doesn’t do something quickly, similar outcomes could face many more of our young adults.

How do we stop this from happening again?  We must educate and train the community at large about autism.  How do we help this young man and his family? Try to explain autism to the Judge and ask for treatment not punishment.

Helping the community at large:

During the pre-trial interviews of prospective jury members only one person was aware of Asperger’s Syndrome.  He did not make it into the jury box.  When Neli was being interviewed at the police station after the tragic event, he was asked if he had any sort of disability.  When he said he had Asperger’s, the police officer interviewing him said, “What’s that?”  That is too late.  Although the injured officer in this case has a disabled son, he didn’t recognize someone with an ASD when he encountered him, nor was he trained to deal with the likely consequences of Neli’s disability.

As this population with an ASD ages and those individuals, like Neli, who didn’t have access to adequate treatment and therapy become adults, we must explain autism to the community at large.  Just like we had to do for our children’s teachers, caregivers, and family members when they were younger.  We worked for acceptance and training everywhere they went.

We have to be one step ahead of our adults with an ASD in the community.  We must talk honestly about the hallmarks of someone with an ASD and also educate our young adults on how to interact with someone in law enforcement. We have to show our disabled adults how to be interviewed and possibly arrested by the police.  Statistics show they are seven times more likely to encounter law enforcement than the general population.[1]

The legal system is not equipped to deal with individuals that can’t respond appropriately and/or control their response because of a disability.  We have a lot of work to do to educate and train the judicial and legal systems and the community at large.

Helping Neli and his family:

Helping Neli and his family is a more complicated issue.  Funding supports in the community so that someone can be supported and live with a disability safely is a long-range goal that can’t be ignored.  A more immediate goal is let this 19- year old disabled man (who likes to read Goosebumps books) and his family know that he is treasured and they are cared about.  Most importantly – support the attorneys and professionals working to present a sentencing report to the judge that will explain the side of autism that the jury never got a chance to hear and understand.  He should be given rehabilitation and treatment not further incarceration.  Neli has been in jail since this incident happened in May, 2010 but he has been trapped inside the cell of autism his whole life.

Pay attention to this case and pray.

The Autism Safety Project provides First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

Here is a letter submitted to Judge Sharp from Gary Mayerson, the Director of Autism Speaks Federal Appeals Project.


[1]  http://www.autismriskmanagement.com/,  Dennis Debbaudt citing FBI Law Enforcement Bulletin,  April 2001.

 

 

Capital One Financial Corporation held its 2011 Autism Awareness Education Session

On Monday, April 25, 2011 Capital One Financial Corporation held its 2011 Autism Awareness Education Session for its associates at its Richmond facility and broadcast to its offices nationwide.  Don Busick and Nick Sladic, two Capital One associates who founded the associate affinity group called the Autism Spectrum Connection, kicked off the presentation by explaining how they formed the group at Capital One as a part of its corporate diversity program.  A handful of Autism spectrum disorder parents got together informally at first, Don explained, and proved to be the best resource for each other.  In partnership with the company’s HR team, they founded the group with three goals in mind:  to create deeper connection for the families through membership; to provide as much useful and helpful information as possible; and, in the spirit of Capital One, to give back to the communities where they are doing business.

Judith Ursitti, Autism Speaks’ Regional Director for State Advocacy Relations, spoke on the autism insurance reform movement.  She was joined on the panel by Virginia State Senator Janet Howell and Delegate Tag Greason, who were patrons of the Virginia autism insurance reform bill, which will become law at midnight on May 6, 2011.  Robbie Maino, a college-bound high school senior who is the child of a Capital One associate, spoke movingly about how early intervention made a world of difference in his overcoming the difficulties he faced in his own struggles of autism.

In addition to providing information and support to its associates, Capital One has taken the step of electing to provide coverage for autism related behavioral therapies through their insurance carrier.

Rob “RJ” Paczkowski, Capital One’s Director of Health and Wellness, gave an overview of their autism health insurance benefit.  Beginning January 2010 Capital One provided health insurance coverage for behavioral therapy for autism and other related disorders, with no dollar or age caps, as long as the treatment was pre-certified and provided under the supervision of a board-certified behavior analyst.

In addition to insurance coverage, Capital One associates can take advantage of flexible spending accounts to pay for alternative treatments or over-the-counter medications and supplements as long as they present a doctor’s letter of medical necessity. Capital One also worked with their Employee Assistance Plan to help organize special services  and resources for special needs children and to connect its associates with government benefits available to disabled dependents which are based on the individual’s needs, not the parents’ income.  Stephen Evanko and several other Capital One associates closed the session by sharing how the autism health insurance benefit made a difference in their children’s lives.

Delegate Tag Greason, Senator Janet Howel, Judith Ursitti, and Robbie Maino

Hope and Autism Advocacy

June 22, 2010 1 comment

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

I know that you have heard the word HOPE, but have you ever felt the word HOPE? I have and I do.

I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.

I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.

At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees  as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.

In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.

Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.

There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.

Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.

Christopher Reeve said, “Once you choose hope, anything’s possible.”

I choose hope.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visitwww.autismvotes.org

“Rest assured, you have the attention of the President and the White House”

“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC

By Geri Dawson, Chief Science Officer

Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.

The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.”  She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.”  Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.” 

These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.”  He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.”  “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.” 

I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.

It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.

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