Monthly Archives: June 2012

Yes, I’m Only a Bill…and I’m Sitting Here on Capitol Hill

 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!

To the Senate Armed Services Subcommittee on Personnel

I received an email a few days ago requesting 1-page letters from military families who have children with autism to be read at a Senate Subcommitte hearing this Wednesday.  The hearing is to push for ABA Therapy to be covered by insurance for not just active duty members as it is now, but also for all Federal Employees and for retired service members as well.  This request hit home because 1. I’m looking to retire in 5 years and am not sure how I will pay for ABA for 2 children and 2. Writing about autism has become a new hobby of mine, and I think I’m pretty good at it! So I decided to write a letter.  And then I decided to post it here.  Thanks for reading.

To the Senate Armed Services Subcommittee on Personnel:

My name is MSgt Melinda Burts, and I have been an active duty member of the United States Air Force for 15 years.  My oldest son, SB, was diagnosed with autism at 20 months old in 2006.  My husband and I were devastated.  He was completely non-verbal and behaviorally was nearly impossible to control.  I cannot express how thankful my husband and I are that SB was able to receive ABA Therapy beginning at age 2, and that this therapy was covered under my Tricare insurance.  Although the road has been frustrating and challenging at times, SB’s progress has been truly astounding.  He has been receiving ABA Therapy now for over 5 years.  He just completed first grade in a mainstream classroom.  He still has plenty of academic and behavioral issues to work on, but he was able to handle the kindergarten and first grade academic curriculum with some special education support.  He was even identified by the Advanced Academics Teacher for being gifted in math, and received weekly group instruction in advanced math concepts.  He is a success story (yet still a work in progress) and I truly believe he would not have made these strides without years of intensive ABA Therapy.

My husband and I watched our younger son, AB, very closely for signs of autism throughout his infant and toddler years.  His language, cognitive, and social skills seemed to be on track for a while.  But at age 4, we started to notice delays in some of these areas and also a few familiar autism behaviors.  AB was diagnosed with autism in November of 2011 at age 4.  His condition is milder than his older brother’s, but he has issues that definitely need to be addressed.  Again, my husband and I are relieved that we have access to ABA Therapy that is covered by Tricare, and AB has already made progress in many areas in the few months he has been receiving therapy.

I cannot imagine how my family could have survived financially if I had been paying for this therapy without the help of insurance.  The going rate for a BCBA (Board Certified Behavior Analyst) is $150 per hour, and the going rate for an ABA Tutor is $50 per hour.  If I add up the services that my children currently receive in a typical month, at these rates it comes to $3800 for SB and $2400 for AB, for a total of $6200 per month.  But because each child with autism is different, the services that each child needs can vary.  Also, the services that a child needs can vary at different times in his life.  For example, SB was having some behavioral difficulties at school this year, and our BCBA spent a lot of time at his school working with his teachers to create a behavior plan for him.  It was extremely successful and all of his teachers agree that his behaviors improved drastically after the plan was put in place.  But this required our BCBA to spend as much as 15 hours a week at his school for several weeks.  This comes to an extra $2250 per week (or an extra $9000 per month) for a temporary period of time.  I am an enlisted member of the U.S. military and my husband is a public school teacher.  There is just no way that our family would have been able to afford this level of ABA services without help.

I strongly believe that all medical insurance plans should cover ABA Therapy.  I have seen with my own eyes how incredibly beneficial ABA Therapy is for all children with autism, both the mildly impaired children and the severely impaired children, and all of those in between.  And as I approach 20 years of service in the military, I must admit that I am nervous about how I will pay for ABA Therapy for 2 children after I retire.  I cannot impress enough how important I believe it is for ABA Therapy to be covered for Active Duty Members, Federal Employees, and Retired Military Members alike.  Please consider taking the action necessary to make this happen for your service members.

Sincerely,

Melinda M. Burts

Rub-a-dub-dub, I’m afraid of the tub

It was the evening of November 13, 2006, only 5 days after SB’s devastating autism diagnosis.  I placed him in the bathtub for his bath, just like I did every night.  He had never complained about baths before.  In fact, he usually seemed to enjoy them, and liked to spend a little time splashing around in the tub after being washed.  On this night, however, he began screaming as soon as I sat him in the tub.  He immediately stood up, and screamed and cried as though in terror.  I checked the water temperature, which seemed fine.  What on earth was going on?  At 20 months old, he had no words to tell me what was wrong.  Even more frustrating, he had very little receptive language, which means that he really didn’t understand what other people were saying to him.  My attempts to soothe him were pointless.   “Don’t cry.  It’s ok.  It’s just a bath.  See?  It doesn’t hurt.  It’s just water.  There, there.  It’s ok.”  He just stood there, screaming as though in pain.  Finally, I used a washcloth to splash him off a little bit, and quickly took him out and dried him off.  I guess he didn’t really need a bath that badly, anyway. 

The same thing happened for the next 9 days.  Ok, I may have skipped the bath a few nights in there, not wanting to deal with the screaming and crying.  But after a while, I couldn’t keep skipping his bath over and over, because he was starting to get stinky.  I realized that I had to deal with this problem, because it wasn’t going away on its own.  My husband and I were baffled, and I was distraught.  I had just learned that my child had autism, and I was already overwhelmed by all of the things he needed to work on.  Now, all of the sudden, here was a new one to add to the list.  Where did he get this fear of baths?

The first thing I did was to ask the pediatrician what to do.  Her suggestion was to tell him 15-20 minutes in advance that he was going to take a bath soon, and then talk about what I was doing during every step of the bath in a calm, soothing voice.  I wrinkled my brow looked at her like she was nuts.  Did she forget that he was just diagnosed with autism?!?!?  “HE DOESN’T UNDERSTAND ANYTHING I SAY TO HIM!” I rudely replied.  “Oh,” was all she said after that.  You start to feel pretty hopeless when you realize that you have stumped your doctor.  If we had a problem like this now, the first person I would go to would be our ABA therapist.  But since this happened in the first 2 weeks after his diagnosis, we hadn’t started ABA yet.

So where did I go next on my quest for help with this problem?  Google, of course!  I learned from searching the internet is that this is actually a common problem among toddlers in general, not just children with autism.  This was comforting for me to read.  In fact, for the last 5 years I have wrestled with this question every time I see an unwanted behavior in either of my children, which is almost daily: Is that an autism behavior, or just a normal child thing?  Most of the time, it’s impossible to know for sure.  For some reason, learning that it was a normal child thing made me feel a little bit better.  There were a lot of articles on the internet about how to help your child get over a fear of baths.  And many of these articles also contained comments from parents who listed strategies that they had used successfully.  But since most of these parents did not have children with autism, many of the suggestions seemed somewhat irrelevant and useless to me. 

The first piece of advice that I read on several different websites was to never drain the tub while your child is in it, because some kids develop a fear that they will get sucked down the drain.  I had never drained the tub while SB was still in it, and so I was pretty sure that this was not the issue.  There were also lots of stories of children who had pooped in the tub, and then became scared to get into the bath after that.  Again, I knew that this was not the issue I was dealing with.  Another suggestion was to get into the bath with your child.  I tried this, but it didn’t help at all.  It actually made him even more upset.  I’m not sure why, but I’m guessing that since I had never done it before, it was confusing to him.  I also read that it might help to buy him a new bath toy to get excited about, but if you have read my post “I’m not an ABA Therapist…but I play one on TV,” you will remember that SB didn’t really play with toys yet.  He had no toys that he liked or connected with, so I knew that this suggestion was also no help. 

Then I finally read a piece of advice that I thought might be relevant: bubbles.  SB loved to watch us blow bubbles.  Here was something I could work with!

So on the first night of “Operation Calm Bath,” Charlie and I got to work setting up our bathroom in advance.  We filled the tub with warm water and lots of bubble bath.  To double the bubble fun, I also brought a bottle of bubbles for me to blow.  I put a CD player in the bathroom to play his favorite CD at the time, which was the Fisher Price Little People “Sing-a-Long Favorites.”  We turned the lights down to add to the calming ambience.  Then we went to get our little boy.

Charlie put SB in the tub, and let him stand instead of sit.  Of course, he screamed bloody murder, like always.  But then I started blowing bubbles, and he got distracted.  I blew bubbles, I sang, I reached in and splashed around in the bubble bath.  His crying was intermittent while Charlie washed him off with the washcloth as quickly as possible.  I would say he cried for about 60-75% of the bath, which, sadly, was a huge improvement over the 100% of the previous 9 days.  We called it a success.

We did the same thing the next night.  And it got a little bit better.  He cried for less than half of the time he was in the bath that night.  And the most important milestone on this second night was that in the moment Charlie finished washing him off, he wasn’t crying.  So we were able to take him out of the tub happy, and praise him for doing a good job.  Each night he seemed to get a little more comfortable, and cry a little bit less.  On the fifth day, we were actually able to coax him to sit down in the tub without a lot of crying.  After 2 weeks of “Operation Calm Bath,” he finally seemed to forget his fear and enjoy bathtime again.

The only thing that my husband and I could come up with as a possible reason for the sudden fear of baths was that SB had a bit of a diaper rash on that first night he got upset in the tub.  It’s possible that when he sat down in the water, it stung a little bit.  And since he was not very rational at the time, (actually, he’s STILL not very rational, and there may be a post about that someday soon!) maybe he was afraid that sitting in the water would hurt again every night, even after the rash cleared up, because he didn’t connect that the rash was the reason for the pain.  He just knew that one time, the bath caused him pain, so he was afraid to get in it again.  We’ll never know for sure, because he didn’t have the language to tell us at the time, and he doesn’t remember the incident now.

In retrospect, I think that the most important lesson I learned here is to NOT PANIC when a new behavioral issue arises.  When SB started having these bath terrors, he was newly diagnosed with autism, I was pregnant, and life just seemed so damn overwhelming that I didn’t think I could handle one more thing.  So when this one more thing did occur, I felt so depressed and full of despair.  I thought things like, “How will we ever get past this?  Will he always act like this when I try to bathe him?  How are we going to find the time to work on ALL of his issues?”  Looking back on all that we’ve learned in the past 5 years, I now know that when a new behavior occurs that needs to be addressed, it’s important not to panic.  I’ve learned to:  1. Take a deep breath.  2. Consult my ABA therapist, doctor, the internet, other parents, etc. until I find a strategy (or several) to try.  Be patient, and keep trying.  Something will work.  3. Remind myself that it will NOT always be like this.  Some behaviors can be fixed or controlled in a few weeks, like this one.  Others may take years, like SB’s weird rocking habit in bed.  (That is another interesting post for the future.)  No, I don’t have time to work on ALL of his issues.  Not at once.  But I CAN work on one thing at a time.