Autism, ABA, and Insurance (oh my!)

We have had some harrowing experiences with insurance coverage over the past few years.  I think any autism parent can say that.  I do, however, have a unique perspective since I work as a nurse case manager for an insurance company.  

When I worked in the hospital, I adopted the whole “evil insurance company” mentality, I will admit.  How did I find myself working for an insurance company you ask?  For me, it was a matter of family- not working weekends, holidays, nights, having a regular schedule, and gasp….making more money.  Oh, and working from home.  Understand I would not have stayed at this job for coming up on 9 years if it was not also intellectually challenging, and if I didn’t come away with the feeling that I have helped someone significantly pretty much every single day.  Anyway, enough about me.  What I have found over the years is that this whole insurance “vs” (for lack of a better word) medical provider relationship is MUCH more complicated than most people could ever realize.  And while it’s so much easier for us as patients to lay the blame on the insurance company, it so often isn’t the case. 

For a few days last week, I thought this philosophy was coming back to bite me.  My husband’s employer does their open enrollment in June and the new insurance starts July 1^st.  I should start by saying that when my husband was offered this position, we vetted the health insurance plan almost more than the actual job, and it was just as important, if not more so, than salary.  The insurance was amazing, with a few small exceptions, and it really did influence our decision to make the change.  And for the first time ever, my sons were able to get ABA.  If you follow my blog on Facebook, you know just how amazing this has been, especially for our younger son.  We are seeing so much progress, and we only started ABA back in March.  So when rumblings started that they would be switching insurance providers, my mind started going a million miles a minute.  I asked John so many questions that I am sure he was ready to muzzle me (no comment John, no comment).  I am sure I am obnoxious, but it’s with good reason.  I can’t even begin to explain how many hours I spent filling out assessments, asking for letters from different people, faxing, oh did I fax, and calling the autism care coordinator (and constantly slipping in the fact that we work for the same company).  It paid off, and the team we have in place is amazing.  The idea of possibly losing that- I couldn’t even bear to think about it.  Luckily, when we found out who the new company would be, I ran it past the ABA company coordinator and she said she works with them frequently- so I tried to breathe.

And then last Thursday John had his open enrollment meeting.  And he texted me that everything looked good, except….a small passage in exceptions:

“non-medical counseling or ancillary services, including but not limited to custodial services, education, training, vocational rehabilitation, behavioral training, biofeedback, neurofeedback, hypnosis, sleep therapy, employment counseling, return to work services, training, educational therapy or nonmedical ancillary services for learning disabilities, developmental delays or autism”

Knife in my heart.  I will admit it, I initially freaked out at John.  I try to stay calm, and I usually do a pretty good job, but when it comes to the boys….yeah, I suck at it.  God bless him, John emailed the HR rep, even sent her a copy of the habilitative services mandate for Maryland.  I couldn’t just sit there and twiddle my thumbs, so I scanned the entire document, emailed it to the ABA coordinator and she confirmed my fears- this was an “autism exclusion clause”.  Which basically meant NO coverage for autism.  Not just aba either- we are talking taking major steps back and not even getting occupational therapy for autism.  We would likely be able to get limited sessions under the “rehab” heading if we used the diagnosis of developmental delay, but that’s it.  This is right where we started when Jack was 3.  Nightmare. 

I think the biggest question you are probably asking is how this is even possible if there is an autism services mandate in Maryland.  It’s tricky.  Here is a link to some information from pathfinders for autism, which is a great organization that literally helps you find your way through this ridiculous system.

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

Crucial information for parents:

“Maryland lawmakers approved a Bill in 2012 requiring that coverage for autism treatment be clarified by regulators under Maryland's existing Habilitative Services Mandate. The regulation was finalized in March 2014. Only insurance plans regulated by Maryland law are subject to the Maryland Habilitative Services Mandate.”

Read that again- only insurance plans regulated by Maryland law. 

Plans Covered
• Individual Plans purchased in Maryland
• Fully Funded Plans purchased in Maryland
• Plans purchased on the Maryland Health Benefits Exchange (ACA/Obamacare)
• The MD State Employee Health Plan - currently complies with the Habilitative Service Mandate
Plans Not Covered
• Federal Employee Health Plans
• Medicaid
• Military Health Plans
• Employer Self-funded (Self Insured) Plans

They even have a link where you can answer a bunch of questions to try and determine if your child will have coverage.  So here’s the thing- my husband works for a LOCAL government, so we should have been fine right??? WRONG!  When I went back and looked at the paperwork, I saw that this insurance plan was purchased through something called an LGIT or local government insurance trust.  And guess what, because they formed this trust, and purchased the plan from them and not "locally", the plans are considered “self-funded”, and the regulations do not apply.  That does not mean they cannot provide the services, it just means that they aren’t obligated by law.  Military health plans, for instance, have some of the best ABA benefits money can buy (and for what the military is paid, they SHOULD).  But take the self-funded thing, add it to the autism exclusion clause, and you have a recipe for disaster.  And one hysterical mama!

How can I explain how my day went down last Friday?  Well first, I took a half day from work because Nate had an IV infusion (not covered by insurance, ha) first thing in the morning.  Which was the smoothest part of our day.  I dropped him off at Cisco Center after this, where he would catch the bus to school (he has had this infusion multiple times and never has a problem) and headed home to log into work  where I found the happy email telling me that ABA would be excluded from this policy and offering suggestions of possible grant sources (which if you follow me, you know I have exhausted for other services).  Cue the hyperventilation.  I called the HR representative- I was kind as could be- but I am not going to lie, I was sobbing the entire time.  About 30 seconds into the conversation I was 100% convinced that my husband’s company truly had no idea that these services would be excluded.  They know the boys are on the spectrum, and this is a small (think 35 people) organization.  This was not done purposefully; they had tried to mirror the benefits they had with the previous company.  In my opinion, this trust seems to offer these small organizations insurance plans, promising huge savings, and ample benefits, while leaving these services, that not a ton of people need, out to save themselves some money.  And while not a lot of people may need the services, the ones who do REALLY need them.  The trust is who picks and chooses the benefits they want the insurance company to administer- so it wouldn’t matter how many times we appealed the denial of these services, if the insurance company wasn’t instructed to provide these benefits, they couldn’t.  I had to explain this to my husband who had the same instinct as most of us, which was to scream “Cigna sucks!!!”  Nope, they provide ABA beautifully when the trust says, include this benefit.  It’s not their choice. 

So about 10 minutes after I got off the call with HR, I decided to put my head down for about 5 minutes to try and calm myself down.  As in, I set my phone alarm for 5 minutes and did some deep breathing.  When I opened my eyes, I had missed TWO calls from Jack’s school.  I called back and the health room assistant informed me that Jack had two hives on his arm, and did I want to come get him?  Ummm, how about some calamine lotion instead??  Sigh.  So I focused on work, started getting a little bit done, it’s about, hmmm, 1:30 by now.  And the phone rings.  It’s Nate’s school.  He fell asleep on the bus and is completely out- could I please come get him?  REALLY??????  I was honestly looking around for a hidden camera at this point.

On my walk into the school, I got a call from the HR rep.  And just as simple as that she said I want you to know that we are having the language in the policy changed- these benefits will be covered for your boys.  I am not the least bit ashamed to say that I burst into tears and literally told her that  I loved her and was going to send her flowers.  Not the least bit.  This woman made a few phone calls and prevented all of my children’s progress from going down the toilet.  She is my hero.  I picked up Nate, sobbed on the teacher’s shoulder for a minute, took Nate home (where he slept another 3 hours) and tried to finish work between hiccups. 

The morals of this story?

  1- Be obnoxious to your husband if he is the insurance policy holder.  Ask him a million questions and make him paranoid.  Why?  Not because you don’t trust him, but because it works!  The fact that John looked at the benefits summary so thoroughly, spotted the clause and knew enough to point it out, saved our boys' services.  Because finding the problem during open enrollment?  It’s fixable.  Now, we have the extreme luck of being in a small organization- had it been my husband’s previous job he would have been one of 6000 and we just would not have mattered that much.  But this employer also wasn’t offering benefits through a trust either, and would have had to comply with the mandate.  Bottom line is that had John not had the wherewithal to point this out to me, if we had missed this, the problem would have been much, much harder to fix.  husband=hero.

2- If you have questions or concerns about coverage, take them directly to your current care provider- at the end of the day, they want to keep you as clients, paying clients.  And they will give you a straight answer.  The ABA company also is a hero in this situation because my concerns were confirmed and made me more confident in speaking up.

3- Don’t blame the insurance company (not all the time anyway- I am still pissed that I have to take one of my meds twice a day because they won’t pay for extended release) - they are administering the benefits they are instructed and paid to administer.  The decisions are often made by your employer, or a trust, or the government.  The insurance company is the messenger in many of these cases

4- Don’t mess with this autism mama!!!!  I mean business!  And I am getting smarter and savvier everyday- so there!

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

Contraception and Why It Gives Me Hope For Autism

Ok, Ok, I know that could sound bad, but it’s not what you might think.  Any type of progress in terms of insurance coverage is a sign of hope for me.  Like yesterday, I went to pick up my birth control and I whipped out my debit card to pay the copay- the pharmacy technician told me to have a good day after I signed the HIPAA thing.  I said, I’m sorry, but I haven’t paid yet.  Her response- it’s free.

http://www.politico.com/story/2013/06/obamacare-birth-control-coverage-policy-93566.html

I’m out of touch apparently and didn’t know this had actually gone through.  While I disagree with quite a few aspects of obamacare, this is a good call.  I know that some feel like it’s the government’s way of trying to control population growth, but until they are forcing birth control down your throat or holding you down to make you take Depo shots, that’s simply not true.  Unwanted pregnancy prevention is a good thing for both mom and potential baby.  As a nurse who has worked in the inner city, trust me when I say this. It is not an opinion, it is fact. 

So let’s take a little journey through the history of contraception coverage.  When I was a teenager, my OB/GYN wanted to put me on birth control pills due to some issues I was having; she told me at the time that she had to label it as such diagnosis-wise for insurance purposes, otherwise they would not cover it.  In other words, there was no coverage for birth control when used as birth control, only when used to regulate a cycle.  When I was in my twenties, I could go to the student health center and purchase it for a cheaper price, in my late twenties, when the copays were still very high for birth control, if there was coverage at all, I went to Planned Parenthood, because I would rather give my money to a cause that is helping young girls prevent pregnancy than to the insurance company.  I know that many individuals who are “pro-life” would disagree with this decision, but once again, it is the practical, experienced nurse side of me that sees the necessity of this organization.  And for the past 10 years or so, birth control has had the same copay as any other prescription, which frankly was fine with me.

So now it’s FREE

The parallel to autism is fairly obvious.  Right now, almost no medical intervention is covered for the diagnosis of autism, right?  It’s not acknowledged by the government as the public health issue that it has come to be.  It’s not recognized for the medical problem that it is- it’s still considered a behavioral issue only.  And thus insurance coverage for medical intervention is not mandated, as it should be.  For interventions such as occupational therapy, speech therapy, physical therapy, feeding therapy, etc., most professionals are careful to use a diagnosis of developmental delay, speech delay, dysphagia, etc.  Because if the diagnosis of autism is used, it will not be covered.  Even if these services are covered under developmental delay, the number of allotted sessions is often inadequate, as the coverage is not tailored to the needs of a person with autism.  It is not being acknowledged that these are effective and medically necessary treatments for autism.  My hope, and prayer is that autism coverage will follow a similar trajectory (more rapid preferably) and that in the future, when a parent faces a diagnosis of autism they will have the comfort of knowing they can obtain help for their child.  Unfortunately, the issue is complex, and I fear that it will be a long road.  Anyway, this instance does give me hope that the changes that are needed are possible.

My Confounding Compounding Issues....

It’s been about 3 weeks now since our last visit to the developmental pediatrician.  I was given many “assignments” for both boys, as always.  After about 15 phone calls and just as many emails, I think that I have found someone who can compound the ridiculous number of supplements that the doctor wants Nathan to take- without sending us into bankruptcy.  To refresh your memory, or in case you missed that post- it was approximately 11 pills, 2 powders and 9 teaspoons of liquid.  Nate is 3 and doesn’t take pills.  I have continued giving him “some” of the supplements, the ones I have deemed to be the most important, by hiding them in his food and drink, just until we come up with a more permanent solution.  He has been a pretty good sport about it and by now I can gauge how many things I can add to his beloved cup before he rejects it.

It was way more complicated to solve this issue than I had originally imagined.  Our regular compounding pharmacy was pretty slow to respond and their “cocktail” was a pretty standard formulation which they did not seem very willing to alter.  I found another compounding pharmacy that was eager as could be to assist me.  This sadly should have warned me of what I was in for.  I gave them all of the supplements and doses and after several days they called me to let me know that they had come up with a liquid formulation that would be twice a day.  Awesome!  Ha, not so much.  A one month supply of the compound was….wait for it….$250!!!  And they do not take insurance.  This would be in addition to the other supplements both boys are already on.  And if it proved to be helpful for Nate we certainly would want Jack to try it too- there was just no way. 

Back to the drawing board.  I located another compounding pharmacy who wanted to speak directly with the doctor- after many, many attempts we finally made this happen.  I called to check in with them yesterday and they said they need a little more time, but it looks doable, and they estimated the cost to be about $60.  This sounds a bit more reasonable to me, and they suggested I speak with our insurance company to see if compounded vitamins are covered, as they will provide me with the appropriate paperwork for reimbursement if that's a possibility.  I am not holding out much hope, but even if they don’t cover it, we can handle this, especially if it works!  They are also able to provide a flavor that will be palatable, and keep it gluten and dairy free.  Ironically, they are 5 miles from our house- who knew?

Anyway, keep your fingers crossed that we have really finally solved this issue- oh and also that it helps!  After all of this….well I am just praying.

Autism, Insurance, and Maryland

I bring a pretty unique perspective to the world of autism and insurance.  For those who don’t know, I am a nurse- not only a nurse, but a nurse coordinator for an insurance company.  Back when I was a nurse in a hospital I had the “typical” view of insurance companies- you know, they’re evil.  They deny everything.  They are MEAN.  I would find out that one of my patient’s admissions was being delayed because the insurance company had not yet approved it and I would be all up in arms about it.  What’s wrong with them?  What’s to approve?

See now I know that maybe 30-40% of the time I was right to blame the insurance.  Unfortunately, what I didn’t understand is that it goes both ways.  Much of the time it was an issue of the hospital NOT CALLING for authorization until you know, the day before.  And it was a bone marrow transplant- several hundreds of thousands of dollars.  That type of determination deserves serious consideration.  I know that first hand- I make those determinations every day now.  Half the time that the pharmacy tells you that the insurance “hasn’t approved” your medication- guess what?  Yes, the insurance is requiring a prior authorization for either a very expensive or unusual drug- that is their role.  We pay them (or the government pays them depending) a certain amount and they use those funds to responsibly deliver services.  And they are cost cutters for sure.  Do I always agree with it?  No.  But that’s how it goes right now.  The point is that 9 times out of 10 when one of my patients calls me with this complaint- the problem is that the physician never called the authorization request in.  The pharmacy notifies them, and because they are busy, or forget or whatever, they neglect to make the call.  But the insurance takes the fall. 

I am not claiming that the insurance company is above reproach by any means.  Believe me, there are days when I feel like the bad guy for sure.  And there are days that I would like to reach through the phone and wring the neck of whatever representative of my insurance company is telling me that one of my sons is not covered for a service. 

We all know that with autism it is unbelievably difficult to get your child what they need.  I can’t even count how many times I have complained about that in my blog.  Even for the services that are covered, most of the time you can’t even use the diagnosis of autism.  It has to be developmental delay or something similar.  Otherwise it will be denied. 

Today I attended a very interesting conference call for work that was about insurance coverage and autism.  A very interesting and disturbing map was shown at one point.  I knew that Maryland has not participated in the widespread insurance reform that is ongoing to include therapy for autism as one of their mandated services.  What I did not know is that Maryland is one of only 8 states that have chosen not to participate.  Now all of the states that participate have not done so in a thorough or effective manner, but at least there have been steps.  Maryland- nothing.

A few months ago I posted about autism case management services that were offered to me through CIGNA, our insurance company.  I was so mad that they told me that an autism case manager could make me aware of extra services available for my children, and then when I spoke with one they told me that basically, my plan specifically offered nothing. 

http://jackandnatesmom.blogspot.com/2013/04/added-benefits-really.html

At the time I had read about the lack of mandate for ABA and related services in the state of Maryland.  I guess I was under the impression that because I have private insurance, it didn’t have to be state mandated in order to be provided.  I was wrong.  It does.  And it’s not CIGNA’s decision, it’s the employer’s.  And employers as a whole are going to take the least expensive route correct?  So they are going to provide the services that the particular state says they have to provide.  And the particular insurance company?  Well they really have no say in the matter.  They are administering the benefits that their client authorizes them to provide.  In Maryland, this does not include any services for autism.  So basically, we are screwed.

I feel a little bad- I have been mad at Cigna.  Blaming the wrong entity.  Now I am mad at the state of Maryland. To all of my Maryland readers- this is CRAP and it needs to be changed a.s.a.p.   Consult the information below, contact your state representative.  I know that I am going to.  How many of us have children who are missing opportunities, regressing, because we can’t obtain coverage for ABA therapy?  Private ABA therapy, while very effective, is also very expensive.  For parents with neurotypical kiddos, take a gander:

http://www.tacanow.org/family-resources/start-an-in-home-therapy-program/

ABA programs can be costly anywhere from $15,000-$80,000 each year and beyond

What parent do you know that could afford this tab?  Other than you know a real housewife of New Jersey or former MTV VJ?  Let’s get real. 

Just another example of why it is so important to do your research and stay informed.

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.

Just Keep Swimming

What a crazy busy couple of days this has been.  After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days.  But as always, I muddled through.  Not that the week is over, but the worst is.  Sometimes I feel like Dory from Finding Nemo- Just keep swimming...  At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me.  I wanted to recognize and celebrate our little family and our survival after the past year.  We even did some shots of just John and me, first time we've done that since our wedding.  That part was really nice.  Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy.  It was breezy, and Nate even cried when we put him on the swings.  The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast.  Seriously, I am sore today.  Our photographer Heather is amazing and I am sure she managed to get some good stuff. 

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty.  That wind must've hurt so much!  Poor buddy.  We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed.  I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch.  I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child.  Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum.  He went through all the lab results, there were several interesting things.  They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem".  There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause.  He did prescribe a form of folic acid that is further broken down- leucovorin.  Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies.  It basically guards their bodies from harmful effects of the chemo.  That is where this drug is catalogged in my mind.  Time to reframe.  So that was one of the MANY changes he made to the boys' regimens.  More labwork, including urine.  He increased Nate's dose of methyl-B12, asked me to try it with Jack as well.  I am worried sick about giving Jack injections, but it is what it is.  We can do just about anything we put our minds to as a family.  He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione.  Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet.  This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols.  Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines.  Jack's favorite foods. Awesome.  Not feeling the motivation on the elimination of fruits.  Sigh.  Jack's hair samples came back with high levels of mercury.  One of the urine tests should confirm this.  This was the opposite of what I was expecting- thought it would be Nate, if only one of them.  Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him.  Further investigation of this is needed. 

After that appointment, I went home and put in a half day of work.  Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting.  Then last night, the shit hit the fan.  Both boys were up off and on all night.  Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming.  I resolved last night that I was going to let him cry it out.  It usually takes 1 or 2 nights to get him back into his usual pattern.  Last night Nate had other plans.  After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming.  Then I heard the usual thuds of him throwing everything out of the crib.  Then I heard a really big thud and a scream.  And Nate was out of his crib.  CRAP.  Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will.  And as I watched him I realized- I. am. completely. screwed.  I have no idea how I am going to keep my sweet baby in a bed.  We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept.  However, safety first.  So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it.  We were hoping to eek out another few months of him being our "baby".  It's all so bittersweet. 

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor.  A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna.  Does this really mean I don't have a baby anymore?  That just breaks my heart....

The good news is that this is what happened this evening since he didn't sleep last night....

The bad news is that I have no idea how long this will last, so I'd better hit the hay sooner rather than later.

Isn't he the most precious thing?  Sometimes I wish he could stay little forever...

Insurance Rant

OK, I am a nurse case manager for an insurance company.  This is a double-edged sword FOR SURE.  This was never what I would have considered my "dream job", but it actually has come to be exactly that- because of my family.  It enables me to be close by, have a regular schedule, and get the boys to appointments all while making a good income.  And I love helping people, and I feel like I really do that- I work with organ transplant candidates and recipients, for a medicaid/medicare insurance plan. 

That is why I become all the more enraged when something I know should have been done, and should not have been difficult, slips through the cracks for my kids.  I got a call from Nate's OT today, at 4pm, stating that Nate has reached his 60th visit and that if I want him to be seen tomorrow I will have to pay out of pocket, as the insurance company has no record of him being granted extra sessions.  This, when I have a letter from the HR department of my husband's work stating that Nate has been granted these extra sessions for this year- enough to take him through December twice a week.  First of all, the health insurance company was not even given the "freedom" to make a medical determination as to whether these extra sessions were necessary.  No, it was fully a financial decision by the HR department, who then needed to contact our insurance and inform them of this change.  Somehow, this did not occur.  Grrrrrrrrr.......My issues with this situation are many- first of all, the insurance company has nurses and physicians whose sole job is to determine medical necessity of such changes.  So why weren't they entrusted to do this?  Why did it have to go through HR in the first place?  And why the break down in communication?  My husband and I certainly did our due diligence, he wrote a letter fully explaining the situation and was "granted" these sessions, but told that if we want Nate to be able to go next year, we will need to subscribe to the more expensive insurance plan.  It costs 3x as much.  Nice.  Not to mention that even with the plan we are on, they only allow 60 sessions a calendar year- and that is the number of sessions of OT, PT and speech combined.  So if I was taking Nate to speech as well, we would have run out of sessions when?  In May?  How is that reasonable?  I mean, I always joke that I paid five dollars for each of my children- clearly that is not accurate over all, but truthfully, I did pay one five dollar copay at my first OB appointment and that was it.  Pretty sure that cost the insurance company more than Nate's OT sessions- I didn't have a baby this year- I would like a transfer of funds, lol.  Just so frustrated with this.

And while I'm at it, let's just touch on the inequities of different insurance plans in general.  I find myself practically lunging at the T.V. during the debates this year- being in the trenches of administering both medicaid and medicare has changed my views on things so much.  Knowledge can be a scary and maddening thing.  I want to make clear before I continue- I am not criticizing medicaid and medicare for the benefits they provide.  I am criticizing private insurance.  Because, see, I KNOW what kind of benefits the medicaid and medicare recipients are afforded.  And I know the benefits that my family, who pays for their insurance, is afforded.  I know that my clients often receive sedan service to their medical appointments- not a bus pass, not an ambulance, SEDAN SERVICE. I know that if we approve a certain number of visits for a member and they end up needing more, the provider simply has to write a letter stating why this service is necessary and after review, the member can have the service.  I know that my medicaid recipients have little to no copays on medications.  And that if they by chance have a substantial work history and qualify for medicare on top of this (because of their hard work or severe medical condition), they actually wind up paying MORE for their medications.  Why?  Because medicare is not as comprehensive as medicaid, and many states, in an effort to cut the budget have decided that if medicaid (which is state run by the way, not federal) is the secondary insurance they will not cover the difference on prescriptions that are covered by medicare.  Medicare's copays are way more expensive than medicaid's.  Soooo..... I find responsible people who have qualified for medicare in addition to having low enough income to qualify for medicaid are being punished.  This is pretty common among my organ transplant patients- they work, they get sick, they can't work, they qualify for medicaid.  And then when they either hit a certain age, or begin dialysis they qualify for medicare.  Sounds great right?  Dual coverage?  Guess what- transplant meds, they're really really expensive.  If the medicare copay is a percentage- half of these patients can't afford their meds!  Seems like punishment to me.

Can you tell I am passionate about this?  I did what I never ever do to the insurance coordinator at Nate's OT- and I'm not proud of it.  However it served it's purpose.  I yelled.  I said "so what you're telling me is that I have to call HR and I have to call the insurance company and bring THEM together, which I'm pretty sure they should be able to accomplish on their own, or you won't see my son.  Oh, and you're telling me this at 4pm on FRIDAY?  When his next appointment is Saturday?"  I don't think so.  Our family is a goldmine to the therapy center- both boys go twice a week most of the time- I think they can work with us.  And she agreed eventually that if I sign a waiver stating that if the insurance refuses to cover the sessions I will be responsible that they will see Nate tomorrow.  You know, the state funds medicaid, and the federal government funds medicare- but when my patient needs something outside the "norm" I don't have to give them a buzz to get the needed care.  I just find this strange, that's all.  Also, to be clear, we love the boys' OT's.  They are wonderful to them, and the insurance coordinator has been great too- she is the one who notified us ahead of time that we were coming up on our "cap" in the first place.  So that we could get this modification in place.  So I feel bad for yelling- but I am glad that Nate will be going to his therapy appointment tomorrow.