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'My Employer is Self-Insured. How Do I Get Autism Benefits?'

The webchat was hosted by Lorri Unumb, Esq., Vice President for State Government Affairs.

 

Hi everyone! Hang tight! We are about to go?
 
7:58
  Hi Everyone -- It's Lorri Unumb, Vice President of State Government Affairs for Autism Speaks. We'll get started in a few minutes; we have a few people from the government affairs staff who are signing on to help answer your questions. I'm writing to you from my home base in Lexington, South Carolina. As background, I have an 11 -year-old son with autism and two other boys (ages 7 and 4). I work to pass autism insurance mandates in all 50 states, but I also spend a great deal of time helping families who work for self-funded companies convince those companies to offer autism benefits. I'm looking forward to your questions! 
 
8:00
 
Comment From Todd

My son is 3 high function autistic and we have been told by Speech and OT that he is an excellant candiate for service and he would greatly benefits. Virginia, Aetna, self funded, global company over 80 countrys, 8,600 employees and autism, speach and OT not covered. I make too much per the state of Virginia to qualify for any aid. each time theraphy office submits the claims for coverage it is denied and appeals are denied. Any thoughts?

 
8:03
  Hi Todd -- I'm sorry -- who is your employer? In my experience, it doesn't do much good to submit claims and appeal unless you first convince your employer to offer the benefit. Tell me more. 
 
8:03
 
Comment From Guest

How can we convince them that ABA is not experimental therapy?

 
8:06
  Hi Guest -- We have some reports and studies that can help convince your employer that ABA is not experimental. We usually cite, for starters, the Surgeon General's report from about 10 years ago. And the National Research Council report. There's also a federal court decision called McHenry v. PacificSource that states ABA is not experimental, as well as a recent Florida Medicaid case that says the same. Email us at advocacy@autismspeaks.org if you need copies of any of these resources. We're also glad to write letters on your behalf!
 
8:06
 
Comment From Todd

My company is called Cegedim Relationship Management

 
8:07
  Todd -- Have your asked the benefits committee to add an autism benefit? That's the first step. If they don't have one, then they can deny your claims all day long.
 
8:07
 
Comment From Guest

I am in the middle of a Plan year whose SPD excludes autism benefit for ABA therapy. Any tips to win an appeal or are the efforts focused on next year's Plan and how to get these benefits in?

 
8:08
 
Comment From Guest

Can a self-insured employer superceed the Plan document a approve an appeal for a particular autism related benefit?

 
8:09
 
Comment From Guest

My employer works hard to be in the FOrtune 100 best companies to work for. How about you get Fortune to include autism or special needs children benefits as a criteria!

 
8:09
  Hi everyone, this is Peter Bell and I've decided to join Lorri tonight to help answer as many questions as possible. To the Guest who asked the question about Fortune 100 companies, please be sure to visit our Autism Votes website and look under the Resources section for our page on Self-Funded Health Plans (http://www.autismvotes.org/site/c.frKNI3PCImE/b.5216011/k.1245/Selfinsured_Companies_and_Autism_Coverage.htm
 
8:19
  Hi Ed -- Have you seen the PowerPoint at www.autismvotes.org/selfinsured? I put together a slide show especially for families who are trying to convince their employers. We also have additional resources, such as letters from companies that DO cover ABA about how little it has impacted premiums and how pleased they are with the coverage. We also maintain a list of companies that offer meaningful autism benefits. The list is a little out-of-date, largely because we cannot keep up with all the companies that are adding benefits! An abbreviated version is on the website, but you can email us at advocacy@autismspeaks.org and ask for the latest. It can be helpful to show your employer that other companies in your industry are covering. Make them feel a little heat from their competitors! Most self-insured companies pride themselves on being competitve in their benefits package. Finally, we can come with you to meetings with your HR department, if that would help convince your company.
 
8:20
 
Comment From Liz Delorme

Just moved from SC to Florida, we have BCBS (self insured trust fund type) we had TEFRA for our son, since we moved we lost TEFRA and our Fl doesn't have the same program. Our son is 3- aged out of Baby net in SC, and now since we just moved Im trying to figure out a way to get his services covered outside of school. He needs ABA, ST and OT. Any suggestions?

 
8:20
  Hi Liz -- Who is the employer through whom the BCBS plan is offered?
 
8:20
  Hi Deb, this is Peter and your question about the ARICA law in Mass is an excellent one. If you review the statute (or legislation), there's nothing that says an insurance provider can stop covering your son's services because he has "plateaued". If a medical provider deems that your son still need treatment, the law requires the health plan to provide coverage. You can learn more about the ARICA law here (http://www.autismvotes.org/site/c.frKNI3PCImE/b.4432481/k.90A7/Massachusetts.htm). thanks for joining us tonight!
 
8:21
 
Comment From Guest

Will this chat be available for viewing after completion?

 
8:21
 
Comment From Ana

Do you have resources or examples of how to convince them to make 'exceptions'? Their arguement surely would be that they can't make excpetions otherwise it opens the door to so many claims

 
8:21
 
Comment From Todd

I do not know where to start to convince my company. Can someone send me an email with some guidelines

 
8:22
  Dear Guest, we will post the chat transcript on the Autism Speaks blog as well on the Autism Votes website under Resources. That way everyone can read the comments. Thanks for joining us tonight.
 
8:23
  Hi Ana -- In the case where I've seen companies make exceptions to their own policy, they usually were responding to a plea from a family, often times a valuble employee. If they become afraid that an employee in whom they've invested considerable resources will leave over this, then they're more likely to suggest "interim coverage." Do you know if other companies in the same industry offer coverage?
 
8:23
 
Comment From Scott Coffey

Lorri - Just wanted to say thanks again for the help and to encourage everyone under a self-insured plan to reach out to their company management. My company, a very large international law firm (Squire Sanders) was receptive to hearing about how much coverage can help ASD kids and made a change to include ASD benefits. You can do it. AutismSpeaks, AutismVotes, etc. are the best resources, but I am happy to help too if you want to write to me.

 
8:24
  Todd - there is a Powerpoint presentation on the Autism Votes website athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5216011/k.1245/Selfinsured_Companies_and_Autism_Coverage.htm. If you would like someone from the government affairs team to help you please email info@autismvotes.org
 
8:32
  Hi Ana -- It is both. Self-insured companies are being told by their insurance brokers and/or by their third-party administrators that ABA is experimental. At Autism Speaks, we have started meeting with the medical directors at these insurance companies (the third-party administrators) to educate them about ABA, but it takes time to break their mentality. ALSO, companies are afraid of the cost. The TPAs are also telling them that it will cost a lot, and of course we now know for a fact that it does not. The Missouri Department of Insurance put out a report earlier this year stating that the addition of an autism benefit (including ABA) cost insurers about 0.1 percent. We have great cost data now, so please write us if you need help with that point. As we survey states that have autism mandates, we're find the average cost to be about 30 cents per person per month when spread over all members of a health insurance plan.
 
8:32
 
Comment From Ed

I have not seen the Power Point. Thanks. I will start tomorrow with HR and get back to you. I work for Chubb and will be in touch! I have BCBS.

 
8:33
  Ed -- We are more than happy to help! I look forward to hearing from you.
 
8:33
 
Comment From Liz Delorme

MEBA Marine Engineers Benefits Assoc, its a union

 
8:33
 
Comment From Liz Delorme

They have denied everything to date, I put together a packet of reports, letters of med necessity, progress notes, etc, and waiting to hear from the board of trustees. We already know what the answer will be, but just don't know where to go once they say NO...

 
8:34
  Liz -- I think we have some unions that are now offering coverage. Maybe give them the names of some of their peers. Write us at advocacy@autismspeaks.org and ask for our most complete list of ERISA companies. I'm pretty sure some railroad unions cover it and I think there's a marine union on the Great Lakes that covers it.
 
8:35
 
Comment From Guest

i have GHI insures what do they cover for autism..

 
8:35
  For those who are interested in a company that specializes in helping patients get the most out of their benefits, you might want to look at Medical Claims Liaison (www.medclaimsliaison.com). For a fee, they will work with you to get the most out of your health plan. You can mention that you heard about them from Autism Speaks and they will give you a discount. Disclaimer: we are not promoting or endorsing this service. Just thought some of you might be interested.
 
8:36
  Sorry, but we don't know what a particular company covers (unless it's on our list of ERISA companies that cover autism benefits). Ask your employer for a copy of your summary plan description.
 
8:36
 
Comment From Betsy

As a stay-at-home mom to our 3 year old with PDD, I am his primary advocate. I do all the research for his services, IEP, ST, Early Intervention in MA, etc. ABA is NOT covered under our self-insured plan. I have asked my husband to reach out to his HR on numerous occasions b/c United Healthcare denied our ABA claim. HR has given him the run around. Although he is a Sr. Mgr with outstanding employee review and such ... he doesn't want to "rock the boat" and be "that trouble-maker guy that puts his job in jeopardy by essentially requesting the HR dept to make an exception for us". Any advice on how to be assertive and persistent but not aggressive or put your job on the line? I'd like to go to a meeting with his HR but he doesn't feel it's my place since I'm not the employee. Thanks in advance for your feedback!

 
8:36
 
Comment From Ana

Yes, we are a large Casual Dining organization. White Castle is not a direct competitor, but similar industry and they offer it according to info I received from you

 
8:36
 
Comment From Alisha

Just wanted to say a big THANK YOU to Autism Speaks and Mike Wasmer in particular... My company is not yet budging on our self-funded plan, but we are not giving up and I truly appreciate all the support I have already received!

 
8:37
  Ana -- White Castle is one of the companies that wrote a letter for us detailing their coverage and the approximate cost and saying how proud they are to offer this for their families. Write us if you want a copy!
 
8:37
  You are very welcome Alisha. We are right there with you! - MW
 
8:38
 
Comment From Glory Buyrn

It would be great if there were a place that employees working for the same company could rally together on this issue. I do not know anyone else working for our company facing this issue. However, with such a large company (Sprint) I know that there are others out there.

 
8:39
 
Comment From Glory Buyrn

You mention that you know what your ERISA list companies cover. Do you know what benefits that Home Depot offers?

 
8:40
  Glory -- The last we checked, Home Depot offered good autism benefits. Ask your HR department for a copy of your summary plan description. It's always possible that benefits will change from year to year, but I think Home Depot is still one of the good ones.
 
8:41
 
Comment From Todd

Thank you I will download the powerpoint and be in touch

 
8:41
  Todd -- Look forward to hearing from you! Write to us at advocacy@autismspeaks.org.
 
8:41
  Hi Betsy, I especially like your question about trying to get your husband's self-funded plan to provide ABA coverage. Many years ago I worked for a Fortune 100 company and I knew firsthand how isolating it can feel to be an employee that has a unique health issue. I know exactly how your husband feels. My recommendation is that your husband actively seek other employees who have a child with autism. I actually approached my HR department and told them I'd like to meet other parents with ASD children. Your husband might want to organize a lunch and learn session to draw other parents. You would be surprised that once you "go public" about having a child with autism, other employees who have similar issues will approach you. I assure you that with a 1 in 88 prevalence, your husband is not the only employee that has a child with autism. Those are some suggestions on how to build a cohort of employees who have the same needs. Once you have a critical mass, it's much easier to approach your HR department. I hope that's helpful. My best, Peter
 
8:41
 
Comment From melissa

To the BoA person: I work in Tx for a pediatric therapy center handling pt ot st for these kids.... I am VERY WELL versed on how AETNA denies these claims....You do indeed have 90 visits combined; HOWEVER, AETNA's clinical policy bullentins state that although AUTISM is NOT excluded from coverage....in order for OT or ST to BE COVERED the condition must result from a non-chronic accident, injury, illness or congenital anonmoly. This is how MOST insurance plans in america read today. UNLESS an employer specifically agrees to cover Autism or devp delays it is VERY difficult to get coverage

 
8:42
  Glory - Mike again. Two thoughts: 1) Consider hosting a "lunch and learn" at work to raise awareness about autism. Invite local experts in to talk and answer questions about autism. This may help to identify co-workers with affected children. 2) Please email us atinfo@autismvotes.org. We may be able to connect you with other families across the US who work for the same company.
 
8:42
  Betsy -- Are you married to my husband??? Lorri :-) 
 
8:43
 
Comment From Glory Buyrn

I don't work for Home Depot, but if they cover ABA, I would consider taking a job there. I had a friend working there once, checked her HR info, and they only mentioned ST & OT.

 
8:43
 
Comment From Roseann

FYI...I have had speech therapy and OT claims for my son denied because the diagnosis code was Autism, but when they were resubmitted with a diagnosis code as developmental delay, they were paid.

 
8:43
  Glory -- That's funny. When my son was diagnosed, my husband and I (who are both lawyers) considered taking a job at Home Depot! Coverage for ABA would have made up for the loss in salary!!
 
8:44
  Glory -- We will reach to Home Depot to verify that their coverage is not just ST and OT. Write to us to remind us to let you know what we find out.
 
8:46
  Thanks for sharing this tip, Roseann. Sadly, this is how insurance works sometimes. Diagnostic codes can make a big difference. Years ago, 299.0, the diagnostic code for autism, was a death knell for any coverage. However, thanks to autism insurance reform in the last five years, things are improving. But your experience is not uncommon. Sometimes you just have to submit claims multiple times. Thanks for your insights. Peter
 
8:47
 
Comment From Todd

Betsy I understand about the company issue of rocking the boat. I cannot tell you how nervious I am about it. I too am a senior manager who worries about this. I am the only income in my family as I have a sick wife, a health daughter of 12, and my son who needs the services. What do I do if I rock the boat and then have no job. Perhaps Virginia will not say I make too much then LOL

 
8:50
  Everyone -- In addition to the PowerPoint that is available at www.autismvotes.org/selfinsured, we have some sample letters that we have helped families write to their HR departments. For example, we have a letter that a Princeton employee wrote to Princeton University, which resulted in Princeton adding coverage. As I mentioned earlier, we also have letters from a few employers (such as White Castle and Ohio State University) talking about their experience with offering coverage. We have contacts at DTE Energy who are willing to talk with other self-funded companies about their experience adding an ABA benefit. And we have the ever-expanding list of companies that already cover autism/ABA. Please do not hesitate to contact me at lorri.unumb@autismspeaks.org if you want any of these resources. And let us know if you want one of us from Autism Speaks to go with you to meet with H.R. We can get on a conference call with you or physically accompany you to a meeting. And make sure to let your companies know that 30 states (soon to be 31 when the governor of Alaska signs the bill) have mandated this coverage, so obviously it is a worthwhile benefit!
 
8:50
 
Comment From Glory Buyrn

Is there a way to save the script from this Chat?

 
8:51
  Todd and others, rocking the boat is a real concern. My suggestion as I pointed out earlier is to recruit other employees so you aren't the only one in the boat. I assure you that your employer has multiple employees who share the same needs that you have. Sometimes we know other employees at your company so feel free to contact us offline at advocacy@autismspeaks.org to see if we can be helpful. Also, we will be happy to speak with your employer/HR department if that would be helpful. Good luck and "rock the boat baby!". :) Sorry, we get a little giddy at the end of the day.
 
8:52
  Glory, a transcript of this webchat will be posted both on Autism Speaks and also onwww.autismvotes.org under the Resources tab---look for Webchats with Government Relations
 
8:54
 
Comment From alison

Are there any changes with health care reform at the federal level that will require the self-funded plans to cover ABA or other treatments? We live in CA but that is useless since Medi-Cal doesn't cover ABA and we have a self-funded plan.

 
8:54
 
Comment From alison

We have a self-funded plan (Aetna) through my husband's employer. There are only about 600 people in the company. Since it is a self-funded plan, doesn't that mean the employer would be paying for the cost of the treatment? For example, if they covered $60,000 of ABA/year that equals an extra $100 per employee (then multiplied by the number of children that would be receiving ABA). That seems like a pretty significant cost.

 
8:56
 
Comment From Betsy

Several resource/contact email addresses have been provided tonight (such as:info@autismvotes.orgadvocacy@autismspeaks.org, lorri's email) ... what is the typical turn around time to get a response from one of these email addresses? and ... will an email get routed to the right person/department on your end if it isn't sent to the most appropriate email address?

 
8:56
  Alison - re: federal health care reform. The PPACA does not address self funded plans. Please take a look at the information on the Autism Votes website about approaching you HR department /Users/wasmer_ms/Library/Application Support/SnapNDrag/screenshot_02.jpg - MW
 
8:57
  Todd and EVERYONE -- I wanted to add one more thing about being nervous to "rock the boat." (I think those of us in the South worry a lot about this because we're just not brought up to be "boat-rockers" against our employers.) I just want to make sure you know that, from a legal perspective, the management of your company should never know about any inquiries you make of your H.R. department. If you approach management, that's a different issue (and in some cases that's not a bad strategy). But if you prefer that management not know, you should be able to go to H.R. directly without management learning of it. I once included management of a company on a conference call about adding an autism benefit for an employee's child, and the management screamed "Stop" at me before I could finish the sentence. He said that in order to comply with federal law, they have a firewall between management and H.R. on benefits matters, and he didn't want to know anything about it. 
I know that it's hard to trust that, just because the law requires confidentiality, it will be respected. But I can tell you that these big companies are pretty nervous about their compliance with federal employment law. So unless you're on the verge of getting fired tomorrow, I would gather up your strength and make the ask!!! I think H.R. will respect you for advocating for your child. Good luck!!!
 
8:58
  Sorry Alison - gave you the wrong link. Try this <a http:="" www.autismspeaks.org="" advocacy="" insurance"="" style="border-top-style: none; border-right-style: none; border-bottom-style: none; border-left-style: none; border-width: initial; border-color: initial; border-image: initial; color: rgb(232, 93, 0); cursor: pointer; " target="_blank">http://www.autismvotes.org/site/c.frKNI3PCImE/b.5216011/k.1245/Selfinsured_Companies_and_Autism_Coverage.htm
 
8:58
  Alison, your understanding of how a self-funded plan works is accurate. These employers take on the risk and and are essentially responsible for the cost of the health management costs that their employees and dependents experience. However, it's important to note that the additional cost of autism treatments spread over all the people covered in a health plan are almost always negligible. Our experience has been that it less than 1.0% incremental cost, or under $1 per member per month. Autism benefits are not only morally correct, there are fiscal benefits as well. Over the life of the person with autism, there are substantial savings if you intervene early and get them on a good trajectory.
 
8:58
 
Comment From Deb

For all those who need to speak with your employer. When I went to my HR person I explained what each service was and how it could benefit my son. I also reached out to my co workers and in my school found 3 other teachers who had children on the spectrum( I had been there for 7 years and had no idea). With the new 1:88 stats, you are not alone. I also explained that it really would only cost cents for the company verses the 20,000 dollars my family was paying for my son,s therapy a year.

 
8:59
  Betsy, the Government Relations team is small responds pretty quickly to these requests. They get routed to the appropriate staffer once we receive them and we make our best efforts to respond quickly.
 
9:00
  Thanks, Deb. That's a great testimony on how recruiting others at your employer can work. Very helpful.
 
9:01
  Betsy -- If you email me directly and I don't respond on the same day, write me again the next day and the next day. Seriously. I respond to email all day every day unless I'm on the road, which is often. But I get lots of email!!! So just keep writing! (Our email was out all day today, so anyone who wrote me today, that's why I didn't respond!!! I must say that it made for a very pleasant day. :-)
 
9:01
 
Comment From Bama from Alabama

Hey guys. Thanks for all the information. I knew the chat would be informative about pursuing self funded ASD coverage. We have countless inquiries about self funded insurance reform at the Autism Society of Alabama. We are trying to guide families and thank you for the help. Bama

 
9:02
  I'm going to sign off. Lorri and Mike may stay on for a few more minutes. We are so grateful that you joined us tonight. Keep up the good fight and please continue to join us as we advocate for autism insurance coverage for every American family affected by autism. We won't stop until our children get the coverage and treatment they need. Bless you all! Peter Bell
 
9:03
  Hey Bama -- Good to hear from you! Let us know how we can help Alabama families and companies, as I'm sure the inquiries will grow exponentially with all the attention on insurance reform in Alabama this year. I will call you soon to catch up!
 
9:03
 
Comment From Roseann

Any idea how the Florida Medicaid case will affect the future?

 
9:05
  It's unclear that this point, Roseann, but it sure is a great case! I'm told that the defendants (the Florida Medicaid agency) are planning a vigorous appeal. I'm also guessing that the agency might be looking to settle the case so as not to create further bad precedent. We will be following it closely, and we're also following several efforts in other states to secure coverage for ABA through Medicaid. It's the next big wave, in my opinion, and it should be!
 
9:05
 
Comment From Glory Buyrn

Great. Thanks so much!

 
9:09
  Thanks for joining us, everyone! We look forward to working with you and hearing from you as you persuade those companies to cover our kids! Please don't hesitate to reach out for resources or assistance, and don't forget to keep yourselves up to date by checking the self-insured page on www.autismvotes.org. Take care and have a great night -- Lorri Unumb
 
9:09
 
Comment From Roseann

Thanks for all you are doing to help those affected by Autism!

 
9:09
  Thanks, Roseann. It is my honor to work on behalf of our families and children. :-)
 
9:09
  Good night!
 
9:13
 
Comment From Sheri

If CIGNA has agreed to follow the Autism Law in California, will that affect whether or not CIGNA follows similar laws in other states?

 
9:14
  Sheri -- No.