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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!!! :-)

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.

How does research help my child today?

November 25, 2011 3 comments


 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

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.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

Halfway There: A Personal Reflection on Autism Insurance Reform

April 20, 2011 37 comments

This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks.  She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.

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Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional.  Six years ago this summer, I sat down at this same kitchen table to write my own bill.  The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended.  I was tired of reading EOBs that deemed my son’s treatment “experimental.”  Or “educational.”  Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.

I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.”  As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.

I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses.   But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.

For two years we fought and negotiated and persevered.  We contacted legislators one by one and asked for 15 minutes to explain our situation.  We had no lobbyist, no money, and no organizational backing.  Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.

In the end, the legislators in South Carolina did the right thing.  They passed our little autism insurance bill – twice.  They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.

The law became known as Ryan’s Law, after my son.

In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey.  When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home.  The celebration was over, and we went back to our real lives.

At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states.  In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.

Ryan is now 10.  In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills.  In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.

Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts.  As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process.  What stands out are their stories:

  • The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.
  • The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.
  • The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.
  • The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.

I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts.  And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.

At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism.  To me, the autism insurance reform movement is a shining example of democracy at its finest.

Although we have now reached the halfway point, we have a long way to go.  Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage.  Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome.  Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws.  (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)

Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier.  As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law:  “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”


Kermit the Frog Was Right: “It’s Not Easy Being Green”

February 23, 2011 3 comments

Autism Speaks and the Association for Professional Behavior Analysts Team Up for a Workshop on Autism Insurance Reform

This post is by Lorri Unumb, Esq., Senior Policy Advisor and Counsel, Autism Speaks.

For several years now, Autism Speaks has kept a map of the United States on our wall and on our Autism Votes website where we track states that have passed autism insurance reform bills.  Our map is color-coded:  Blue is for states that are not pursuing autism insurance reform; yellow is for states that are developing insurance bills; red is for states where autism insurance reform bills have been endorsed by Autism Speaks; and green is for states that have enacted autism insurance reform laws.

We celebrate with great joy the addition of every new green state, of which there are now 23.

But over the course of the last couple of years, we have developed a great appreciation for the fact that passing a new law – becoming a green state – brings with it not only joy, but also major headaches. Passing a law is but the first step toward reform; implementation and enforcement of the new laws can be equally difficult.  A new law on the books will not make adequate networks of participating providers suddenly appear.  A new law will not make appropriate CPT codes and rate structures magically materialize.  Advocates in newly green states face mountains of work and many thorny issues.  In other words, to quote Kermit the Frog, “it’s not that easy being green.”

To assist families, providers, regulators, and others who are working to pass or implement new autism insurance laws, Autism Speaks has partnered with the Association of Professional Behavior Analysts to present a full-day workshop on Health Insurance Coverage of ABA Treatment for Autism Spectrum Disorder.”

This workshop will feature leading experts in the field in two sessions:

  • The morning session is called “Obtaining Health Insurance Coverage of ABA Intervention for Autism” and features Gina Green, PhD, BCBA-D, of the Association of Professional Behavior Analysts; Eric V. Larsson, PhD, BCBA-D, of the Lovaas Institute Midwest; Billy Edwards, MS, BCBA, of Behavioral Innovations; and myself.  This session will provide participants with information, suggested strategies, and supporting resources for advocating for legislation to require health insurance coverage and working with insurance companies to obtain coverage of ABA intervention in individual cases. Topics will include making the case for the efficacy and medical necessity of ABA intervention for autism, the costs and cost savings of insurance coverage, qualifications of ABA providers, the basics of becoming a health insurance provider, working with health plans, and billing.
  • The afternoon session is called “Implementing Autism Insurance Laws” and features Bryan Davey, PhD, BCBA-D, of the Arizona Centers for Comprehensive Education and Life-Skills; Daniel Unumb, Attorney; Susan Butler of the Early Autism Project; as well as Dr. Green and Dr. Edwards.  This session will focus on topics such as appealing denials of coverage, addressing provider reimbursement issues, and working with state insurance officials and others to ensure compliance with mandates. Successes as well as obstacles to successful implementation and strategies for overcoming those obstacles will be discussed from the perspectives of advocates, family members, and providers of ABA treatment.

This exciting workshop will take place on Thursday, March 31, 2011 as a pre-conference event adjoining the first annual conference of the Association for Professional Behavior Analysts.  The workshop (March 31) and the conference (April 1-2) will take place at the Marriot Copley Plaza in Boston, and both are open to the public.  Registration is now open and continues through March 15.  Make plans now to join us for this informative event.

Check out our flyer for more information.  Space is limited, so register today at: www.apbahome.net/convention-overview.php

Bringing the Autism Community Together at the 5th Annual Autism Law Summit

October 27, 2010 Leave a comment

This Government Relations post is by Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks and Summit Organizer.

“People who work together will win, whether it be against a complex football defense, or the problems of modern society.” ~ Vince Lombardi

Spoken by Vince Lombardi, the words above have never been more true than during the past three years of work by the autism community to achieve autism insurance reform in twenty-three states.  As the community plans and prepares for another legislative season in the fight for reform in all 50 states, volunteer advocates from twenty-six states gathered in Washington, D.C. last weekend for the 5th Annual Autism Law Summit.

This event, which was co-sponsored by Autism Speaks and the Virginia Autism Project, brought together sixty-plus parents, providers, researchers, lawyers, lobbyists, legislators, and other interested professionals pursuing autism insurance reform legislation to learn from one another and share strategies for success. Conversations included not only advice on how to pass autism insurance legislation, but also discussions on implementation in the 23 states where reform bills have already passed.

Attendees at the summit came from Arizona, Arkansas, California, Connecticut, Delaware, Florida, Georgia, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Montana, New Jersey, New Mexico, New York, North Carolina, Oregon, Pennsylvania, South Carolina, Vermont, Virginia, and Washington, DC.

Special guest speaker, Kansas State Senator Tim Owens, who championed a successful autism insurance reform bill in the Kansas legislature in 2010, spoke to the attendees on Friday about working with legislators.  Senator Owens, himself a grandfather of two children on the spectrum, fought long and hard to bring about meaningful reform in his state.  While Kansas is a green state on the Autism Speaks State Initiative Map, indicating that reform has been enacted, Senator Owens shared that he will not rest until all children in Kansas have access to insurance coverage for autism therapies.

Friday night brought one of the event highlights:  a mock legislative committee hearing in the formal moot court room at the George Washington University Law School, where the Summit was held.  Professor Greg Maggs, who is interim dean of the law school, welcomed participants to the GW community on Friday.

While the focus of the session on Friday was the passage of autism insurance reform laws, with nearly half the country having already enacted this legislation, the focus of Saturday’s session was a discussion of the implementation and enforcement of the laws.  Saturday morning’s implementation panel was packed with great information for families and providers who are learning to access new insurance benefits.  The panel was led by Dr. Gina Green, Executive Director of the Association of Professional Behavior Analysts, and featured lessons learned by providers from three of the earliest states to pass autism insurance reform:  Susan Butler from the Early Autism Project in South Carolina; Dr. Billy Edwards from Behavioral Innovations in Texas; and Dr. Bryan Davey from ACCEL in Arizona.

Other Saturday highlights included:

  • David Meador, the Chief Financial Officer of DTE Energy, discussing self-funded companies who voluntarily adopt an autism benefit, much as DTE Energy has recently done.
  • Dan Unumb, attorney, providing an update on autism-related litigation, which is rapidly increasing in volume and scope.
  • Lisa McHenry, the parent-plaintiff from Oregon who successfully sued her health plan for failure to cover her son’s ABA therapy.
  • Dr. Jerry Shook, CEO of the Behavior Analyst Certification Board, discussing trends in training and credentialing of behavior analysts.

“That was a great conference,” said conference attendee Chris Supple from Massachusetts. “I really enjoyed it, learned a great deal, and brought home some great resource material.”

Public Interest Lawyers Show Interest in Autism

September 28, 2010 7 comments

This is a guest post by Lorri Unumb, Autism Speaks senior policy adviser and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.

Autism is a hot topic for discussion at various types of conferences these days, from epidemiologists to economists to educators.  You still, however, don’t often see autism on the agenda at legal conferences. That’s why I was so excited over the summer to have the opportunity to speak about autism legal issues at a national conference of legal aid attorneys and encouraged by the keen interest demonstrated by the lawyers in attendance.

Every state in the nation has at least one legal aid organization, which provides legal services to the poor, and a protection and advocacy organization, which provides legal services for the disabled. Lawyers who work at these organizations, as well as public defenders (who work in the criminal arena), are typically members of the National Legal Aid & Defenders Association (NLADA). As set forth in its website (www.nlada.org) NLADA champions effective legal assistance for people who cannot afford counsel, serves as a collective voice for both the civil legal aid and public defense communities throughout the nation, and provides a wide range of services and benefits to its individual and organizational members. Founded in 1911, NLADA is the oldest and largest national, nonprofit membership organization devoting all of its resources to promoting justice for all in the United States.

Among its activities, the NLADA holds national conferences and trainings for public interest lawyers. My husband, Dan Unumb, who is Director of Litigation at South Carolina’s legal aid organization, proposed trainings on “Representing Families with Autism” for two of NLADA’s summer conferences held jointly in July in Chicago. NLADA enthusiastically accepted and supported the proposal.

The first workshop was presented as part of the Litigation and Advocacy Directors Conference, which is designed for experienced litigation and advocacy directors to assist them in identifying, promoting, and pursuing cutting-edge legal issues in their programs.  A panel of five legal experts educated the attorneys on autism legal issues ranging from health insurance to special education to Medicaid. Presenting attorneys included Sue Tobin of Ohio Legal Rights Service and Sarah Somers of National Health Law Project on Medicaid issues, Tracey Spencer Walsh of Mayerson & Associates on special education law, and Dan and me on health insurance and other autism-related issues.

The second workshop was geared to front-line legal aid attorneys who handle day-to-day representation of low-income or disabled clients. At this workshop, Dan and I were joined by Kirby Mitchell, Managing Attorney of one of South Carolina Legal Services’ largest offices, to present a broad overview of legal issues surrounding autism including health insurance, special education, Medicaid and life-planning issues such as guardianship, conservatorships, custody and child support, hospital collection defense cases, bankruptcy, Medicaid trusts, tax planning, and Social Security disability actions.

The range of legal issues a family affected by autism may face is vast, and the need for lawyers, judges, and judicial staff to be educated on them is equally great.  This outreach is critical to improving legal representation, judicial decisions, and the overall response of the legal system to the complex challenges posed by autism.  This summer’s presentation was a good step in the right direction, and Autism Speaks is committed to making further inroads toward ensuring effective legal representation of families with autism.

In Memoriam: Rod Shealy

August 19, 2010 1 comment

All of us at Autism Speaks are profoundly saddened at the passing of Rodney Ryan “Rod” Shealy, Sr., brother of Lorri Unumb, Autism Speaks senior policy advisor & counsel. A longtime South Carolina political advisor and businessman, Rod helped Lorri draft and find legislative support for the state’s autism insurance reform law, named “Ryan’s Law” after Lorri’s son with autism. Colleagues and South Carolina State legislators remember Rod as a man passionate about the political process and his role in it, but also as one who never missed out on the fun and games of politics. He pushed those he worked with to always do their best and, no matter how far behind in the polls a client may have been, he never once doubted his ability to win. We extend our deepest sympathies to the Shealy and Unumb families and ask the autism community to join us in mourning the loss of this great political ally. Thank you, Rod, for seeing the potential in your nephew, Ryan, and others like him, and for the critical role you played in starting the autism insurance reform movement that is now helping families across the nation access the insurance coverage they deserve.

It’s Time for New York to Pass Autism Insurance Reform

June 18, 2010 12 comments

This is a guest post by Lorri Unumb, Autism Speaks senior policy advisor and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.

In the past three years, 20 states have passed laws requiring health insurance policies to cover individuals with autism and the treatments prescribed by doctors for autism. The New York legislature is on the verge of passing one of the broadest autism insurance reform bills in the nation, and yet some members of the autism community oppose the bill, largely because of its broadness. I write to offer some historical and legal perspective on a bill that embraces a broad approach to legislating.

I have been following New York’s autism legislation with great interest, not only because of my job as policy advisor with Autism Speaks but also because my son with severe autism has health insurance that is governed by New York law. I have a vested personal and professional interest in the legislation.

Further, I have a somewhat unique historical perspective, given my role in helping to spur the national movement toward autism insurance reform. In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:

A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured’s treating medical doctor in accordance with a treatment plan.

The bill did not list the particular treatments that insurance must cover; rather, it required insurers to cover whatever the doctor prescribes, within reason. It contained language that protected the insurers from having to pay for treatments that were unnecessary, not evidence-based, provided by family members, and the like:

[T]he coverage required . . . may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.

This legislation passed in South Carolina in 2007, and since that time, children with autism have been receiving meaningful coverage for mainstream treatments prescribed by their doctors, including psychological care, speech therapy, occupational therapy, physical therapy, and the most commonly-prescribed treatment for autism, applied behavior analysis (ABA) therapy.

The South Carolina law is very similar to Indiana’s autism insurance statute, and individuals with autism in Indiana have likewise been receiving coverage under that state’s broadly written bill.

Since 2007, a number of states have passed autism insurance bills that do not embrace the broad approach; instead, they laundry-list the treatments that must be covered. A typical list from these states includes psychological care, psychiatric care, therapeutic care (OT, PT, ST), pharmacological care, and behavioral therapy (ABA). Also, most bills that have passed since 2007 contain significant limitations of coverage, such as a cap that limits spending on ABA therapy to $50,000 per year or an age cap that requires coverage only through age 21.

In 2009, there were pending in the New York legislature four different autism insurance bills, three of which contained a laundry-list of treatments to be covered. The lists varied considerably, and members of the autism community could not agree on how expansive the list should be. The bills also contained various age and dollar caps on coverage.

In October 2009, the Senate Insurance Committee conducted a hearing on all of the pending autism bills. The all-day hearing included testimony from dozens of witnesses and was extremely comprehensive.

After hearing testimony on the competing bills, the committee chair decided to craft his own bill, which returned to the broad approach of merely legislating coverage and leaving for another body (a regulatory body) the exact specifics of the coverage.

As a parent and a lawyer, I support this approach.

By necessity, legislators are generalists and should not be called upon to list the treatment options from which doctors may choose, or to weigh the evidence supporting one medical treatment against the evidence supporting another. It’s not their job. In the context of insurance legislation, their job is to broadly require coverage if they find coverage lacking and within the public interest.

Critics of this bill don’t like the broad approach. They want the certainty of a legislative laundry-list, as has been provided in numerous other states. However, critics fail to acknowledge that the New York autism community itself could not agree on the list and such disagreement is what led to the broad bill in the first place. I have worked with the autism community in almost all of the states that produced laundry-list-type bills and statutes, and never was there dissension within the community that would have required the legislature to choose among various lists.

Critics lodge several other complaints, too.

First, critics don’t like that the bill limits the insurers’ responsibility to covering treatments that are “evidence-based, peer-reviewed and clinically proven.” Critics say this tripartite standard creates an impossibly high threshold that no treatments will meet.

It is not uncommon for states to limit insurers’ responsibility to covering treatments that are “evidence-based,” which I believe is an appropriate limitation. Generally, premium-payers expect insurers to cover mainstream treatments but do not expect insurers to cover treatments that have not been empirically validated.

The issue in the New York bill is the addition of the terms “peer-reviewed” and “clinically proven.” The addition of these terms does not create a higher standard. To be “evidence-based,” a treatment must have been studied and those studies must be have been published in peer-reviewed journals. Thus, “evidence-based” subsumes “peer-reviewed.”

Similarly, “clinically proven” simply reinforces the concept of “evidence-based” treatment but does not set a higher standard of review.

Critics of the bill have yet to name a single autism treatment that would satisfy the traditional standard of “evidence-based” but would not satisfy the tripartite standard.

It seems that what the bill’s opponents really want is coverage for treatments that are not evidence-based. Certainly, there are many protocols that parents of children with autism try on their children that are lacking sufficient evidence of efficacy. I have used some of them with my own son, and I don’t question the intentions of other parents who do so. But I understand that insurers must draw the line somewhere, and “evidence-based” is where the line is traditionally drawn in health insurance.

The overall success of the autism insurance reform movement over the last three years stems largely from the fact that the autism community has not sought special treatment in insurance matters; we have sought equal treatment. All we have asked is that the mainstream treatments that our doctors prescribe for our medical condition be covered by insurance. To have continued success, we must be willing to limit the treatments for which we seek coverage to those that are evidence-based.

Opponents of the autism bill also criticize “the establishment of a four agency committee . . . to pick out whatever ‘science’ they believe in.” Actually, the bill does not establish a four-agency committee. It simply directs the Commissioner of Health to promulgate regulations (a standard practice following new legislation) and directs the Commissioner to consult with three other relevant agencies in the process. In a field where families and services often suffer because one agency never knows what another agency is doing, it is refreshing to see a collaborative process established from the outset.

Further, I am puzzled by the fear of having the Department of Health determine what treatments must be covered. The opponents wish to have a legislative body (generalists) determine a list of treatments that must be covered, but they fear a regulatory body (health specialists) doing the same?

Finally, opponents of the bill apparently fear losing coverage that currently exists under their health insurance policies or failing to obtain coverage for services like anesthesiological and endocrinological care. S.7000B/A.10372A specifies that it “shall not be construed as limiting the benefits that are otherwise available to an individual under the policy.” As such, if anesthesia is generally covered under a policy, it will still be covered without regard to the list of treatments that the Commissioner of Health develops.

Proponents of S.7000B/A.10372A, who are also parents of children with autism, do not wish to limit the treatments that any family affected by autism wishes to use with their children. Nor do we wish to narrowly restrict what doctors may prescribe for their patients. Rather, we wish to support a bill that is likely to pass – a bill with reasonable limitations that are fair to all parties. Proponents see advantages to broadly-written bills like S.7000B/A.10372A, even for those wishing to include treatments outside the mainstream. For instance, if new treatments emerge, or existing treatments go through the rigors of becoming evidence-based, these can be added through the regulatory process to the list of treatments that must be covered without the need for going back to the legislature to amend the law.

The New York autism bill is good policy. It covers individuals with autism of all ages. It does not impose artificial dollar caps on treatments, as many other states’ autism laws do. It asks the legislative and regulatory systems to operate together, as they were designed to do. And it will offer much-needed relief to individuals with autism and their families, as citizens in 21 other states are now receiving.

Autism Insurance Reform: A Bill’s Survival Guide

June 15, 2010 2 comments

Lorri Unumb, senior policy advisor and counsel for Autism Speaks, Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair, his son Noah, wife Tina, and daughter Sydney.

This is a guest post by Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair.

When Senate File1/House File 1, more commonly known as Drew’s Bill, was introduced in the Iowa Legislature in 2009, it was an unexpected gift.  The autism insurance reform bill, sponsored by Representative Ray S. Zirkelbach and Senator Daryl Beall, was one of the first pre-filed bills introduced in the legislature that year and we hoped that this early action was a good omen.  The Iowa autism community had tried many times in previous sessions to get a bill introduced with no luck. As it turned out, getting the bill introduced would be the easiest part of this long journey.

Just as quickly as Drew’s Bill was introduced, it was killed by the Senate Commerce Subcommittee.  That was a hard day.  I, along with so many other parents, families and advocates could not understand why legislators did not see the merit in our case for autism insurance reform.  Why did they not understand that requiring that health insurance companies provide children with autism spectrum disorders coverage of medically necessary, evidence-based therapies would not only lead them to live a better life now, it would also save the state money on special education services, institutionalization, and adult services later?  That same day advocates became intensely committed to working over the summer to educate legislators on why insurance reform was needed.

With the education underway, we went back to the Senate in 2010 to again make our case for reform.  This time, we were joined by several key players, such as Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks, Judith Ursitti, Regional Director of State Advocacy Relations for Autism Speaks, former Lieutenant Governor Sally Pederson, Senator Beall,  as well as many others that continued to help push for passage of reform legislation.  The first hurdle was the Senate Finance Subcommittee.  The Subcommittee hearing was an all day event.   By the end, we were exhausted, but elated with the unanimous yes vote to move our bill to the full Finance Committee.  With the momentum of the Subcommittee vote, we easily passed the full Committee and then the full Senate.  The autism community was ecstatic.  We could finally see real change on the horizon, but there were still hurdles to cross and the bill’s future was still in jeopardy in the House.

The Iowa House was deeply divided on the bill. HF1 was scheduled for a House Commerce Subcommittee hearing that would become one of the craziest days thus far in our push for autism insurance reform.  The day of the Subcommittee hearing, advocates packed the room.  We knew the bill was scheduled for a vote and that the fate of our effort lay in the hands of the Subcommittee members.  In the end, the Subcommittee refused to vote.  In doing so, they effectively killed our bill.  Even with all the momentum from the Senate passage, all of the education on the issue over the summer, all of the years of activism, hope and prayer from families in the autism community, the Subcommittee would not allow the bill to move forward.

Advocates refused to give up hope.  After going through so much, we just had to get something passed this year.   They say that where there a will, there is a way and for us the way was to include autism insurance reform in the Standing Appropriations Bill, Iowa’s version of the state budget.  Our legislative champions submitted the language and advocates began to contact their Representatives to secure it in the appropriations bill.  It worked!  In a press conference to announce the details of the final appropriations bill, a reporter asked, “what about autism?” Leadership responded, “Autism is in.”

Advocates and lawmakers agree that more work is needed to cover the entire Iowa ASD population. At this point, the bill will only cover state employees, but it is a good first step to give some families the help they richly deserve and begin Iowa on a road towards real and full reform. The passage of the Iowa bill is a testament to the persistence of families in the autism community and the determination of our legislative champions to provide help.   They refused to take no for an answer and did everything possible to ensure that our bill and our effort survived.

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

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