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Autism Speaks to Host Workshop at APBA Convention

Time is running out to register for the Association of Professional Behavior Analysts (APBA) 2nd Annual Convention in Tampa on April 12-14, which will offer informative sessions for both ABA practitioners and consumers. Autism Speaks is hosting an all-day pre-convention workshop on April 12, entitled “Implementation and Enforcement of Autism Insurance Reform.”

The workshop presenters will include Lorri Unumb, Esq., vice president of state government affairs and Judith Ursitti, director of state government affairs, along with Bryan Davey of ACCEL, Billy Edwards of Behavioral Innovations, Gina Green with APBA, and Dan Unumb, with South Carolina Legal Services.

To learn more about the Autism Speaks workshop, go here. To learn more about the APBA conference, go here. Early registration, including discounted hotel rates, ends March 23!

When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Disability Advocates Press Case for ABLE with Congress

February 16, 2012 5 comments

Autism Speaks joined with advocates from the nation’s other leading disability organizations today to make the case before Congress for ABLE—a bill that would allow families raising children with disabilities to save tax-free for their future needs.

The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act.  A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.

The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.

Spielman noted the 600 percent increase in the prevalence of autism over the past two decades and the financial hardship encountered by many families caring for loved ones with autism. The ability to plan for the future needs of loved ones with autism would offer another resource for some families, he said.

John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account.  If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000.

Crenshaw and Van Hollen said the bill enjoys strong bipartisan support in both the House and the Senate, and already has over 90 House sponsors.

Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.

Spielman noted that he and his wife were able to establish a traditional 529 account for their typically developing son  to save for his college expenses, but are unable to do so for their other son who has autism to save for his future life needs. The ABLE act would improve the quality of life for individuals with disabilities, he said.

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Are You ABLE to Support Tax-free Savings Accounts?

February 15, 2012 1 comment

Do you want to be “ABLE” to save tax-free for the future needs of your child with autism? Then come join Autism Speaks and advocates from 48 other national disability organizations tomorrow in Washington, D.C. for a Capitol Hill briefing on the Achieving a Better Life Experience (ABLE) Act. The briefing will be held from noon to 1:30 pm in Room B-339 of the Rayburn House Office Building.

The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.

The briefing has been organized by Reps. Ander Crenshaw (R-FL), Cathy McMorris Rodgers (R-WA) and Chris Van Hollen (D-MD), all cosponsors of HR.3423, the House version of ABLE. A panel of experts, including Stuart Spielman of Autism Speaks, will address the briefing.

According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime. Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more children with autism age to adulthood, their families are growing increasingly frustrated over how to plan for their future. The need for new resources to provide them with necessary care and services is imperative.

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.

Shedding Light on the “Black Box” of Healthcare Expenses: Planning for Autism Health Care Costs

February 7, 2012 1 comment

This blog is provided for informational purposes. Autism Speaks is not affiliated with FAIR Health nor are we offering an endorsement of their services.

Parents and caregivers of children with autism know only too well the difficulty of predicting the need for healthcare services and high cost of providing this care for autism treatment and related health issues. Planning for medical expenses in advance can help relieve some of the stress and allow you to focus on getting your child the care he or she needs.

A new, independent not-for-profit can help shed light on what has often been considered a “black box” of healthcare costs and help families to better prepare to manage expenses. FAIR Health, whose mission is to bring transparency to healthcare costs and health insurance information, offers a variety of free online services. Now families can look up the cost of healthcare services on the consumer website, www.fairhealthconsumer.org. The FH Consumer Cost Lookup on the site is based on a database of billions of billed medical and dental services.

The FH Consumer Cost Lookup includes medical and dental cost data for every area in the United States. Families or caregivers of children with autism can use the service to estimate what they may be charged along with estimates of what their insurers might reimburse for out-of-network services. Now it is possible to estimate how much you will have to spend before you decide whether to go outside your insurer’s network for a medical or dental service.

For example, several tests and procedures must be performed before a diagnosis of autism can be determined. One very common diagnostic procedure is a developmental behavioral screening ‒ CPT code 96110. A family in Los Angeles with a child undergoing screening for autism can use the FH Consumer Cost Lookup to find out the potential cost of this procedure by entering the zip code for the area where the procedure will be performed and the CPT code (or name of the procedure), as illustrated in the screen shot below.

In the next screen, an estimate of the total charges is shown, with a breakdown of the estimated reimbursement and out-of-pocket costs. For a developmental behavioral screening provided in Los Angeles, it is estimated that the provider will charge $124.99. If the procedure is covered by insurance at a 70 percent rate and is performed by an out-of-network provider, the estimated out-of-pocket cost to the consumer is $37.50.

If you know the terms of your insurer’s plan, you can use the FH Consumer Cost Lookup to obtain an estimate of what you may be responsible for paying for medical services from an out-of-network provider. While this estimate is based on FAIR Health’s extensive data on the fees that providers in your area bill for healthcare services, a variety of other factors, such as deductibles or copays, may influence the exact amount that you will have to pay for services received out-of-network.

The website features an easy-to-use slider tool that allows you to personalize the cost estimate by adjusting the level of reimbursement based on the provisions of your health insurance plan.

The website also offers clear, unbiased educational articles and videos about healthcare insurance. For instance, the educational series, “Reimbursement 101,” can help consumers better understand healthcare insurance and the many variables that affect reimbursement.

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