If you know me, you know that I’ve never really given a rat’s ass about politics. I consider myself a Democrat, but a moderate one. I often say to myself, “I really should read the paper and watch the news so that I can be a more informed voter,” but then I usually don’t read any more than the comics and the “Ask Amy” column. That’s why it’s pretty incredible that last Thursday, I actually attended a U.S. Senate Subcommittee Hearing. Willingly, and on purpose! Of my own volition!
One of the reasons I don’t follow what’s going on the political world is because I find it all so confusing. As wonderful as “School House Rock” is, the “I’m Just a Bill” song doesn’t nearly cover all of the intricate steps that it takes to make a Bill become a Law. But I’m going to try to explain here in my blog, to the best of my understanding, what is happening on an issue that is very close to home for me and my family.
As I have mentioned in many past blog entries, I am a huge fan of Applied Behavioral Analysis (ABA) therapy as a treatment for people with autism. In fact, it is the ONLY treatment we use for both of our children. Unfortunately, ABA is extremely expensive. You can read about just how expensive it is in my previous post called, “To the Senate Armed Services Subcommittee on Personnel.” My husband and I feel truly fortunate that as an active duty member of the U.S. Air Force, I have medical insurance that covers this therapy. Many families are not this lucky. I have met plenty of parents who have sold their home, taken a second job, or put a second mortgage on their house to be able to pay for ABA therapy for their autistic child. I’ve met many more parents who simply go without therapy, which just breaks my heart. In the world in which my family lives, ABA therapy is just as essential to my children’s health as antibiotics for ear infections, X-rays for broken bones, and stitches for open wounds. It seems that convincing health insurance companies of this truth is going to take some more work.
Every active duty member of the U.S. military receives health care from a company called Tricare. But Tricare is not the program that covers ABA therapy. That therapy is covered by a separate, supplemental program called ECHO, which stands for Extended Care Health Option. Here is a definition of ECHO from Tricare’s website:
The Extended Care Health Option (ECHO) is a supplemental program to the basic TRICARE program. ECHO provides financial assistance for an integrated set of services and supplies to eligible active duty family members (including family members of activated National Guard or Reserve members).
There is no enrollment fee for ECHO, however family members must:
- Have an ECHO-qualifying condition.
- Enroll in the Exceptional Family Member Program (EFMP) as provided by the sponsor’s branch of service.
- Register in ECHO through ECHO case managers in each TRICARE region.
What this basically means is that to enroll in ECHO and receive services, you don’t have to pay anything extra, but you do have to fill out a buttload of paperwork. Which I have done – twice.
The big issue that led me to attend a Senate hearing is the simple fact that ECHO is currently NOT available to retired military members. I hit 15 years of service in the Air Force on June 11, 2012, and am anxiously anticipating my retirement in 2017. But the ABA therapy issue has given me many sleepless nights, especially after learning that I have not just one, but TWO children with autism. How in the world am I going to afford ABA therapy for 2 children after I retire from the Air Force?
I was excited to recently learn that the train has already been set in motion for this to change, and I was happy to jump on board. (Here is the part where I try to explain everything that I understand about politics, but will probably not get it all right.) Congress is currently debating many parts of the National Defense Authorization Act for Fiscal Year 2013, which is essentially the U.S. Military’s budget for next year. An amendment to this law has been proposed that would extend the ECHO benefits (and therefore ABA therapy) to retired military members and also to Federal Employees.
Why now? Because On May 30, 2012, a federal agency called the U.S. Office of Personnel Management (OPM) released this statement:
“The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB (Federal Employees Health Benefits) Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”
This quote came from an article on Autism Speaks’ website. If you want to read more, click here.
The significance of this statement is huge. Before, ABA therapy was labeled by the federal government as “educational.” This means that medical insurance companies were not required to pay for it, because school systems were expected to provide it. This, sadly, rarely happens. But now that the OPM has changed the designation of ABA therapy from “educational” to “medical,” this puts pressure on medical insurance companies to cover it.
On June 14, 2012, I received an email from Scott Campbell. Scott is an Army Colonel in the Washington, D.C. area, and the father of an autistic child. He is extremely active in the autism community, is very knowledgeable about autism issues in the military, and speaks at autism conferences regularly. Here is an excerpt from his email:
The Senate Armed Services Subcommittee on Personnel will be holding a hearing on the issues impacting our military families affected by disabilities. It is next Wednesday, the 20th of June at 1430 in Room 232-A of the Russell Senate Office Building at Constitution Avenue and C Street in Washington, DC. Jeremy Hilton suspects that a large portion of the testimony and discussion will be referencing a potential amendment from Senator Gillibrand regarding ABA and the recent OPM decision to include ABA as a medically necessary therapy for the dependents of federal employees. He intends to address that issue in his written testimony, along with other issues relevant to our community including special education, TRICARE, Medicaid waivers, and the EFMP programs. In addition, he is soliciting military family stories on one page (I know, not a lot of space) in either a word, jpg or pdf document by NLT than this Sunday night, since he has to submit them on Monday.
If you are in the DC area, we would encourage you to come to the hearing as it will open to the public. For those on active duty, you should NOT wear your uniform. It’s liable to be packed so get there early if you are interested. Thanks very much and we hope to see you there!
As soon as I read this, I knew that I had to write a letter. Partly because this issue is extremely important to me and to the future finances of my family, and partly because writing about autism is, obviously, something that I enjoy. So I wrote a letter and posted it here.
After I sent the letter on Sunday evening, I thought the issue was finished, and I went to bed. But the next day, I started to think about it some more. I thought about how the hearing is open to the public. Should I go? How completely crazy! Mindy in politics!?!?! Wouldn’t a Senate Subcommittee Hearing be incredibly boring? There was nothing going on at work that I couldn’t miss on Wednesday afternoon, and since I couldn’t stop thinking about it, I decided to go.
So I got all dressed up on Wednesday, and boarded the Metro for downtown Washington, D.C. I was getting really excited! I had never done anything like this before. Since I live in the suburbs, it took me almost 2 hours to get from my house to the door of the room where the hearing was to take place. And on the door was a big sign that read “CANCELLED.” I was so disappointed! The hearing had been rescheduled for the next day. On my Metro ride home, I tried to decide if I was going to make this trip again on Thursday afternoon. I had an Air Force Band concert on Thursday evening, which would make the logistics of attending the hearing tricky. But I decided that it was important, and I had been looking forward to it, and so dammit, I was going to go!
On Thursday I put the same outfit back on (because I look cute in that skirt!) and got on the Metro again. And I’m so glad that I did! I never would have guessed in a million years that I would find a Senate Subcommittee Hearing fascinating, but I did. I don’t think my mind wandered for the entire 90 minutes. (I certainly can’t say that when I’m at a band concert, either in the audience OR performing!) There were four Senators in attendance, and six witnesses on a panel who were invited to speak at the hearing. The Senators who attended the hearing were Committee Chairman Jim Webb (D-VA), Mark Begich (D-AK), Richard Blumenthal (D-CT), and Kristen Gillibrand (D-NY.) It is interesting to note that no Republicans were in attendance.
I’ll list the six panel members here as well, and will apologize in advance that they all seem to have extremely long titles: Dr. Karen S. Guice, Principal Deputy Assistant Secretary of Defense for Health Affairs and Principal Deputy Director, TRICARE Management Activity, Dr. Rebecca Posante, Deputy Director, Office of Community Support for Military Families with Special Needs, Department of Defense, Dr. Vera Tait, Associate Executive Director, Department of Community and Specialty Pediatrics, American Academy of Pediatrics, Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks, and Professor of Psychiatry, University of North Carolina at Chapel Hill, Mr. John O’Brien, Director of Healthcare and Insurance, U.S. Office of Personnel Management, and Mr. Jeremy L. Hilton, Military Spouse, Veteran, and Military Family Advocate.
Jeremy Hilton, who is mentioned earlier in the email I received from Scott, is the person who called for military families to write letters for him to present at this hearing. And he was also the only person on the panel representing parents of special needs children. He recently won the “Military Spouse of the Year” award sponsored by Armed Forces Insurance. I believe that this distinction is what got him invited to be a part of this panel, and I think he did an awesome job of representing military families of children with special needs.
I didn’t know what to expect at this hearing. I wondered if there would be a lot of arguing and debate, and I’m surprised to report that there wasn’t. Out of the ten people involved in the hearing, (four Senators and six witnesses) nine seemed to be completely in favor of the proposed changes. The representative from Tricare was the only person still clinging to the label of ABA being “educational” rather than “medical.” And a good portion of the hearing was members of the panel explaining this distinction to the Senators. In the argument that ABA therapy is medical, Drs. Tait and Dawson cited several justifications. The first was that some autistic children tend to elope (run away spontaneously) and can easily get in accidents causing injury or death if the issue is not addressed. Also, some autistic children have feeding issues that can cause them to be malnourished if not addressed. And lastly, there is scientific evidence that ABA therapy can actually change pathways in the brain, and can change the way the brain looks in a scan after time. In my opinion, that last point is the most convincing of all.
Since the OPM’s statement was published so recently, Senator Gillibrand asked Dr. Guice (the Tricare representative) how long it would take for her organization to review their policy and determine if Tricare needed to make a change. After hemming and hawing for a little bit, Dr. Guice replied that it would take at least 6 months. Senator Gillibrand then replied, “Well, I think that is just too long!” Senator Gillibrand is my new hero!
Ok, I have to confess that I did daydream about how it would have been really cool if Mr. Hilton had read my letter at the hearing. But he didn’t. He only read one letter, and it was written by a Marine who had been wounded in combat and was medically retired when he returned home. This Marine has a child with autism, and is unable to access any services for his child because of his retired status. It was a good letter, a convincing letter, and (I must admit) the best choice for the hearing.
Since this was my first step into the world of politics, I’m really not sure what happens next. Although I didn’t do or say anything during the hearing, I was excited to be there. And I wrote a letter that was submitted to the Subcommittee, along with over 80 other letters written by military families with special needs children. It feels really good to know that I did something, even if it was small. I left the hearing feeling very positive about the possibility of change, yet I know that there are many more steps this amendment has to go through. And I’m also aware that only 4 of 15 Senators on the Senate Armed Services Subcommittee on Personnel were in attendance. But I’m thrilled that this matter is being discussed, and I hope I can help in some way in the future to make this change happen. What do you know? I DO care about politics!