At Least They're Healthy?

My husband and I often sit and have this conversation.  At least the boys are healthy.  And then we look at each other. Well, they are aren’t they?  We, as a community, are discovering more and more that autism is caused, or at least exacerbated/triggered by other physical issues, issues that need to be addressed, so I guess in that way, no they are not healthy.  But autism is not life threatening.  And that is what we are focused on when we have these conversations. 

Something I feel compelled to share is just how well aware I am of how much worse it could be.  My job reminds me of this daily.  I am a transplant coordinator for an insurance company- and yes I know this may sound kind of hands off, but I assure you, it is not.  I work with Medicaid patients, many of whom are pediatric, even infants, and I form strong bonds with their parents.  I work hard to make sure these little guys have what they need, authorization to get to and from their appointments, to receive their lab work, their scans, their transplants, their follow up care, their medications, equipment, you get the idea.  That is the technical part.  On the other side of that is the part where the moms recognize my voice the minute they pick up the phone and start talking, or crying, so fast that I can barely get a word in edgewise.  The part where the parents are looking for, or begging really for reassurance that their little ones will be ok.  Or in contrast, parents who are dealing with the stress through anger and yell at me, telling me I have no idea what it is like to have a child with challenges.  The blessing in all of this for me is that I am on the phone, not in person.  The phone gives me the distance I need to do what I need to do;   to explain the difficult things sometimes- that they will need to wait, or move their child to a different facility, or change medications.  In the end, these children get what they need- they are ill, there is an established treatment for their conditions and once medical necessity is shown, the insurance pays for it.  If it is an experimental treatment it can be a bit more complex, but often the study will actually pay for it, and if not, the insurance does at times cover it. 

And I understand that these are life threatening conditions.  Ok, I get that.  I go through the medical histories, the lab values, the scans, all of it on a daily basis and make medical determinations based on my clinical judgment.  Here is what irks me- this is not even an option for ANY of the medical treatments available for my children for their autism.  How can this even begin to be appropriate?  HOW? 

I believe with all my heart and also with my brain (which, not to brag, but it’s pretty good) that future generations will look back on this period of history with shame.  Well, for many reasons, but particularly when it comes to the autism epidemic and the lack of action taken to help those affected.   Treating autism as a purely psychological condition is not going to just sweep it under the rug and make it disappear.  The numbers keep growing, and it is not being addressed, not by a long shot.  Google autism definition

1.    au·tism/ˈôˌtizəm/

noun 1.    a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Now, I was happy to see at least habilitative services become mandated in our state this year- ie OT, PT, speech, and supposedly ABA.  HOWEVER, because ABA has not been covered by insurance ever in the past guess what??  There is no licensure for ABA’s in our state.  So even though in theory, ABA done by licensed certified therapists is covered, there are no licensed therapists, therefore, none of the kids can actually have it.  Clever, huh? 

Currently, Board Certified Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are certified nationally). However, a licensure Bill for BCBA’s was passed by the Maryland General Assembly during the 2014 session. It is expected that the state will begin issuing licenses to BCBA’s beginning in 2015.

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

see?  Isn’t that nice of them?  Baby steps. 

Anyway, let’s step even beyond that.  Into the space where autism is being acknowledged as a medical disorder.  You know the space where most autism parents live.  Only now are the mainstream treatments listed above being covered by insurance, and let me assure you, that alone is still a battle- when we finally got the boys’ insurance company to acknowledge that they needed to pay under the heading of habilitative services we both almost cried- it took months.  Even the oral medications that are mainstream medications (used off label for studies) we have tried have been covered by the studies we participated in- we had to pay for Jack’s medication out of pocket when we continued it temporarily after the study ended.  Other interventions that are being used in autism- they are considered experimental for sure, but can’t that be said for many oncology therapies?  So to list a few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation, supplementation, special diets, glutathione, colostrum, you get the idea.  And what about the homeopathic treatments I have been using with the boys since April- we have seen MARKED improvement in Nate, no question, but the costs are killing us.  These are the “options” given to autism parents.  Other than of course symptom control, such as anti-psychotics, antidepressants, anti-seizure medications, etc.  Those are covered by insurance.  To me, it just seems like it would make more sense to treat the problem at its source than to run around putting out fires (symptoms) all over the place.  But parents are limited in what they can do by their finances.  Parents are asked about their finances before they are presented with treatment options.  There is no insurance coverage for any of it, so if you can’t pay, well, you’re screwed. 

So though it may be so that my children are “healthy” in so much as they do not have a life threatening illness, they do both have a condition that severely impacts their quality of life.  It does affect their physical health.  And unlike any other condition out there, medical necessity is not something that can be proven as of yet, because a cause has not been identified, and medical treatment has not been acknowledged as legitimate. 

Once again I ask, how can we limit treatments for a disorder when we cannot prove what is causing it?  How can we call a disorder “mental” when associated symptoms include GI disturbances, immune dysfunction, eczema, food allergies, and seizures to name just a few? 

Fighting the Good Fight for Our Kiddos- The Battle for Habilitative Services Continues

If you have been reading my blog for a while, you will remember how excited I was last fall when I found out that my sons’ OT and speech could be covered by the habilitative services benefit our insurance plan offers, something that was enacted last May. 

http://www.jackandnatesmom.blogspot.com/2013/10/habilitative-services-in-maryland-for.html

Since that time I have been on the phone with CIGNA approximately 8 times, as they have continued to deny my sons’ claims, starting in October when we first billed under autism and habilitative services, all the way through two weeks ago.  Just so that you know I am not crazy (in this regard, ha), here is the documentation, first the “update bulletin” put out last year, and then the exact wording from the open enrollment booklet for this year:

This document printed in May, 2013 takes the place of any documents previously issued to you which described your benefits

BENEFIT HIGHLIGHTS	IN-NETWORK
Habilitative Services for Children Under Age 19 (Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy) Calendar Year Maximum: Unlimited	100% after the $15 PCP or $15 Specialist per office visit copay

Cigna: Open Access Plus In-Network Coverage Period: 01/01/2014 –

12/31/2014

Summary of Benefits and Coverage: What this Plan Covers & What it Costs Coverage for: Individual Plan Type Open Accessst Ifr

Limitations & Exceptions

Home health care No charge, after deductible Limit 16 hours

Rehabilitation services $15 co-pay/

Coverage for Rehabilitation, including Cardiac

Rehabilitation, service is limited to 60 days

annual max

Habilitation services $15 co-pay/

Covered for children under age 19 (Including

physical, speech and occupational therapy,

autism, autism spectrum disorder and cerebral

palsy)

Skilled nursing care No charge, after deductible Coverage is limited to 100 days annual max

So of course I called them, right?  First I was told that habilitative services were not covered AT ALL.  I faxed them the documentation, and they said, how about that.  Then when the claims were still denied, they said they did not have an appropriate “code” to bill under.  When the open enrollment bulletin came out, showing everyone that this benefit is offered I suggested nicely that they get on the stick since soon I would not be the only one who seemed to be aware of the benefit.  Did they?  Nope.  Then they said that this service was not covered for autism.  Ummm, see above.

But I thought surely, definitely now that we are in 2014, after this was in the open enrollment bulletin, it would no longer be an issue.  Logical reasoning would bring you to think that this would become a no-brainer when it has been printed for an entire segment of local government to see and enroll for.  But, alas, I forgot that this is not meant to be logical.  So the denials have continued.  We are lucky to be with an OT practice that is kind of in the fight with us, and understands that I am doing this for the greater good.  Because right now, we are at the beginning of a calendar year, and if I wanted to make my life easier, at least temporarily, we could go back to billing as rehabilitative services for the next 60 visits.  But I refuse to do this.  I want the company to do it right.  And even more importantly, I want these services, which are so needed and deserved, to be provided for our kiddos with autism.  I want validation that these services are not “rehabilitating” anything- they are working on life skills, they are habilitative.  So being the glutton for punishment that I am, I called Cigna again today. 

And I think it happened.  I think I got the “magical” person- you know the one- the representative who is there to really do their job and who actually cares that you get what you need?  She pasted notes all over the boys’ records (in the computer) with details of the habilitative benefit and confirmation that it exists and resent the claims for payment.  Even more- she gave me a confirmation number.  So I can call back and say “yes huh, she did too say it would be fixed and I have numerical proof!!!”  Am I confident that this is it?  That there will be no other hurdles in this regard?  Not at all.  But I do feel like we took a big step in the right direction.  We, as parents to these amazing kiddos, have to fight to make sure that these benefits continue.  We can’t make that happen unless we use them.  And if we have to fight to use them right now, well then, so be it. 

Having The Rug Pulled Out From Under Your Child: Yet Another Reason To Detest Drug Companies

I am pissed.  That’s putting it mildly.  My kids have enough to deal with, they don’t need further obstacles put in their way.

But that is exactly what is happening.

My biggest issue right now is with the Namenda trial Jack is enrolled in.  We have been at the Children’s National Medical Center site for the Forrest pharmaceuticals study of the use of Namenda (a dementia medication) in the treatment of autism.  Jack began this study in May of 2013; he couldn’t start sooner as he was not old enough.  We went through multiple visits for preliminary testing, then every 2 week visits, then finally monthly.  The study has been run poorly by this company the entire time- they progressed to a “new phase” giving the researchers (at 20 sites in the US mind you) 2 day’s notice to see ALL of their patients.  We have been called back for blood work when they forgot to ask for ONE tube of blood- this is almost a 3 hour journey round trip in traffic.  We have gone for visits at ridiculously inconvenient times, including coming home during rush hour from DC in the direction of the beach on a Friday in August.  That was a blast.  I dealt with being chastised for “frequent absences” from work and made the difficult decision to file for FMLA for both boys, something I should have done long ago, but resisted- it was a pride thing.  I worked my ass off to make sure that I took no more than my allotted hours off, never went over them, but it didn’t matter, because the fact that I took them one day at a time for appointments, etc., created many “incidents” which apparently looks bad.  So I had to protect myself, my family comes first, end of discussion.

But all of this was ok.  I chose to do this study because I wanted to leave no stone unturned when it came to helping the boys.  This medicine is milder than ADHD meds, i.e., Jack didn’t fall asleep 5 times a day or scream when I left him in his room at night, his focus was maybe a little better, but it’s hard to say.  It was a mild difference and honestly could be that he’s just maturing.  So I wasn’t even sure the medication was helping.  But about 3 weeks ago he finally reached the weight cut off and we were able to double his dose- effects may not show for about 8 weeks, so we have been hoping. 

And then?  Rug=pulled.  Forrest decided that they have enough data from other subjects and ended the study.  This is NOT the same thing as ending enrollment, or not taking on any new subjects.  No, they decided to pull all of the kids off of the medication, whether they completed the study period or not.  I am livid and feel that this is extremely unethical.  If the study period was set for 2 years, it was for a reason- this is what we signed up for, this is what we put our children through numerous blood draws, ecgs, and developmental tests to achieve.  This is what caused me to miss so much work.  Every family in this study worked for it.  And now it’s just over.  We went for our “final” visit today- 2 hours of testing (which I frankly considered refusing multiple times) and Jack no longer has the medication.  No weaning, nothing, just done.  So even studies that are there to “benefit” our kids will only benefit them if more data is still needed??? 

Now I am FURTHER refining my criteria for any future studies.  It’s pretty specific.  NIH or center based studies only.  Never again will I subject my child to a study run by a drug company.  They clearly gave no consideration to the subjects as actual people- children.  And it sickens me.  I had to work really hard to be kind to the researcher and nurse today, even knowing that it is totally not their fault.  It is totally out of their hands when the study is “closed”.  But I don’t know that I could work under those circumstances- they have developed relationships and trust with these families, only to withdraw support with no warning.  Awful.  They did tell me that I could ask my pediatrician if they would prescribe it.  I already had, and she said that if I wanted to continue it, she would research it and prescribe it for us.  We are lucky though- we have an amazing pediatrician who is very forward thinking.  That is not the case for many other children.

Between this and our insurance company’s continued denials of both boys’ OT for habilitative services/with an autism diagnosis, I am on the war path.  I have given Cigna IN WRITING, the policy 3 times.  They didn’t develop appropriate coding for the procedure- a rep told me.  Guess what?  Not our problem.  Find a miscellaneous code, and suck it up.  They had better get their asses in gear and quickly as they literally advertised these services in the open enrollment pamphlet for 2014.  I may have been the only one who found out about it for 2013, but it’s common knowledge now.  The HR representative at my husband’s job was to call Cigna and get this fixed, as I know if I call again it will not end well.  Meanwhile, my boys missed their appointments last week.  Because of insurance denying covered services. 

So basically, if you use private insurance you’re screwed, if you go the study route, thus avoiding the insurance debacle, you are also screwed.  Love it. 

Mommy and Natey Time

OK, the first part of this will be whining, but I'll get it over with as quickly as possible ok?  Earlier this summer I had scheduled myself to be off of work all week in case the funding for Cisco Center didn't come through.  Then it did, hip hip hooray!  So in a shocking and selfish move, I kept two days all for me- planned to work this mon, tues, wed, and then take off the rest of the week to get organized for the school year, buy school supplies and consign stuff that doesn't fit anyone anymore. 

Well first, I had to schedule a study appointment for Jack- there goes Friday morning, so John and I just decided to get the boys early from Cisco and take them to see Planes in the afternoon ( I am Soooooo excited).  Then last night I hear hacking from Nathan's room; then sneezing, then coughing.  He ended up sleeping with us last night and there was no way I was going to expose a room full of special needs kids to an illness- talk about a death wish, lol, so I kept him home.  There goes Thursday.  I won't deny that no matter how much I love the kids, I was really looking forward to this time.  Like REALLY.  So I was pretty bummed. 

But then Nate and I snuggled in my bed until almost 9, and had a leisurely breakfast, then we played for awhile.  He seemed ok, so we went ahead to the consignment shop and dropped off a bunch of clothing.  And he still seemed fine, so we went to Marshall's, where we spent time just looking at toys and books for him.  He was beside himself with happiness, either over our one on one time or the toys, couldn't quite tell.  When we were done, I plopped him in his seat, walked around, got into mine and turned around to this....

It appears it was the mommy time that he was happy about.  I am sure he was thrilled to be the one and only for a day- this happens so rarely.  This smile completely turned my day around (although honestly, I was already happy).  We went home and ate lunch, and then we both took a nice long nap- he's still sleeping.

 

In a stunning climax, I checked my messages and got the BEST EMAIL EVER from the compounding pharmacy.  They ran Nate's mitochondrial cocktail through our insurance (finally) and guess what???? IT'S COVERED!!!!!!  With a $35 copay.  I. am. ecstatic!!!!!!  So we should be getting a 5 day supply by Monday- the flavor will be chocolate cherry.  If he will take that, then they will send his full prescription.  If not, we'll try another flavor.  Victory is sweet!!! And apparently so are mitochondrial cocktails!

Added Benefits? Really?

Sigh.  Mommy is annoyed, really, really annoyed. 

Last weekend when we were at the conference, I visited a booth for a private ABA provider- their flyer said that they accepted Cigna.  We have Cigna!  Goody!  I was talking "insurance talk" with the representative and she said that although they have a contract with Cigna, they have never had a client successfully get services with this insurance.  Well, I am an insurance case manager right?  So I thought I would at least explore.

The first thing I checked was the state law.  Discouraging fact #1- Maryland has no mandate for insurance companies to provide autistic children with ABA (applied behavioral analysis therapy).  It has gone before the legislative session multiple times and never passed.  Let me explain why this is a travesty.  The medical community at large still does not acknowledge autism as a medical problem.  It is considered strictly behavioral.  Therefore, the ONLY therapy that said community recognizes as legitimate for autism treatment is ABA.  This is why OT has to be billed as developmental delay and not autism.  OT would not be covered for autism.  And speech has to be billed as speech delay, not autism.  None of these services are covered for autism.  A neurology consult similarly would be billed as some type of neurological deficit, but not autism.  The insurance would not pay if it was billed as autism.  So to discover that the one widely accepted therapy for autism is not mandated in our state made me, well, really really pissed.

OK, well we have private insurance, right?  It doesn't have to be mandated for them to cover it.  So I called the ABA company and asked for the CPT codes they use for ABA, then called our insurance company.  No one knew what ABA was- awesome.  I realized that this was because I hadn't selected behavioral health.  Mainly because I KNOW that autism is not just a behavioral problem- it's roots are deeply based in medical issues.  Oh well, so I called back and asked for behavioral.  When I asked about ABA, the representative asked, are you worried that your child might have autism?  I kind of laughed and said no, my child does have autism.  She gasped and said, don't you have an autism case manager?  Ha.  She further stated that I NEED a case manager for my son because there are "additional benefits" for children with autism.  Well this is news to me, because when I do a provider search on the behavioral website and enter "autism" as the speciality, big blinking letters pop up and warn me that "this service may not be covered for the diagnosis of autism."  Which, frankly, is why the insurance company has not been aware of my kids' autism.  We don't need any added challenges.  Anyway, the rep said she was going to assign us to a case manager and "expedite" it.  I guess that's what you get when they know you're a case manager too.

OK, so I got sucked in.  Maybe they ARE going to help.  I mean, they don't have autism case managers sitting there to do nothing do they??  So I was happy to hear from Holly today.  Until she said that ABA is not a covered benefit for the Cigna plans in our state because it is not "mandated".  Funny, because if medical necessity is shown it is covered by MEDICAID which, I pay for.  But not by my private insurance, which incidentally I also pay for.  She went on to tell me that our family qualifies for psychotherapy- extra sessions, due to our children's conditions.  Jackpot baby!!  Not.  I laughed and said, funny, because my therapist informed me last night that my visits are being audited.  I guess I have been seeing a therapist TOO regularly?  I told my therapist that I would be glad to "turn on the crazy" if needed, or explain to them that this process has taken "a bit longer" due to both of my sons both being diagnosed with autism and our first "therapist" (who was "in network" by the way) losing his license due to misconduct in the middle of our "work". So I'm awful sorry for the delay.  If only I had known that having autistic children means I get to talk to someone MORE I would have come forward with this long ago.

Sorry for the bitter tangent, but wait, I'm not done!  I go to look up the "forbidden" autism specializing therapists, knowing that they are no longer off limits, and lo and behold, there are about 10 ABA therapist on the freaking list!  So I gave Holly a jangle and said, ummm, what the heck is this?  She explained that even though they are theoretically "in network"  we can not use them because we don't have the benefit.  Ummm....doesn't that make them "out of" my network???  So now I plan to search for an ABA therapist who also happens to be LCSW or an liscensed psychologist.  But after the experience that John and I had last year, I am very weary of allowing my children to have therapy.  I just don't trust therapists in general after that.  We have been very fortunate to have the person we are currently working with, but that came only after a wretched experience with someone that did way more harm then good.  I think I will insist on being in the room IF I take them to a non-ABA or covert ABA therapist. 

Well that's an hour of my life that I'll never get back.