a true tale of why it is important

I try not to go political on this blog. But I've been thinking about something for a long time.  I feel like sharing this story might help people understand why health care reform is important.  You are, of course, entitled to your own opinion.  But this is the important question...IF you were where we were a year ago, what would ... what COULD you do?

As any of you who have read this blog over the last year know, we received a pretty grim diagnosis on Eldest about 10 months ago.  If you don't know or want a trip down ugly-memory road, read here (knowing something is wrong but not being able to find help) and here (deciding to hospitalize her) and here (the diagnosis) and here (treatment in the hospital) and here (finally finding the right therapist) and here (becoming part of the public mental health system) and here (the struggle when insurance won't pay any more and the public mental health system abandons you).  Good lawd...finding those links was one depressing foray.  I haven't looked back for a long time.  But it was cathartic to do so; it makes me realize how much better she is.  Which leads to my point.  Health care.

We are a family with GREAT insurance options.  Car-man's employer has a business unit that is a health insurance broker.  As such, they've got good benefits.  They've even got mental health coverage better than most.  While dealing with the insurance company was a total pain in the ass, we ended up realizing that we were lucky to have the coverage we had.  How did we know this?  Because every time we were settling bills at the hospital...the mental hospital...they said, we have lots of payment options for you.  We can work out a payment plan...can you handle $200 a month?  And we were able to say, "Uh, we don't need that, here is a check for the deductible and bill the insurance company for the rest."  We could do that and have it be over.  And writing that big deductible check was totally worth never seeing an invoice in our mail reminding us of the darkest point of our nightmare.

So, most of Eldest's hospitalization was paid for by insurance.  We ended up about $2,000.00 out of pocket.  Then, because we had eaten up all the deductible with the hospitalization, all the meds and about four months of therapy were covered by insurance.  At the end of the four months of therapy we began paying out of pocket...$120 a week for one private session, one teen group session and one parent session for Carman and me.  I was also paying $75 a week for my own therapist and an occasional $75 for Younger's sessions (can you imagine being the younger sister watching this nightmare up close and personal?)  That $75 rate was the insurance rate.  I think it would have been $100 or $125 an hour if we hadn't had insurance.

So, last year cost us about $5,000.  What did that buy us?

• It bought finding a pharmaceutical mix that would  help Eldest control her moods, wouldn't enable her eating disorder but wouldn't cause her to gain weight (which would also re-trigger the eating disorder), would allow her sleep and didn't take monthly blood work because she is soo needle-phobic that we would have to sedate her every. single. time. they did a blood draw.
• It bought finding a therapist with whom Eldest has bonded. 
• It bought not needing to send her to a state mental hospital for 90 days.
• It bought Eldest's acceptance that something was wrong, that her parents' weren't evil, that she needed it help.
• It bought getting to stop receiving weekly County mental health visits.
• It bought help.
• It bought skills.
• It bought Car-man and me learning how to deal and work with an illness we knew nothing about.
• It brought back a girl who wants to live.
• It bought stability.
• It brought back a girl we used to know.

It was worth every cent.  It was worth five times what we spent.  And had we HAD to spend that amount of money we could have but .... luckily ...we didn't have to.

Now it's 2010.  This is a year where things continue to get better, stability-wise.  She still needs help.  There is NO DOUBT about that and she's continuing to get it.  But THIS year the insurance situation is different.  When they rolled out the new plan at Car-man's employer they touted it as better mental health coverage.  Oh, but...Eldest's therapist isn't on the list.  In fact, there isn't A. SINGLE. FLIPPING. THERAPIST. WHO. TREATS. HER. CONDITION. IN. TEENAGERS.  In fact, there is no one who even does the form of therapy for teenagers that Eldest is getting and needs (Dialectical Behaviorial Therapy--"DBT", in case you care).  I credit this therapy singularly for the real changes in Eldest's ability to cope.  Sure, the drugs are important, but long-term change is going to come from the therapy.

So what does this mean?  We pay out of pocket for therapy.  They are still giving us the insurance rate.  $120 a week.  That's worth it.  Oh, but because there is no therapy recognized by our insurance eating up the deductible we have to pay for the drugs out of pocket.  That was a bit of a shocker.  Last year 100% of drugs were covered.  We never realized what that meant.  For her current set of meds we are paying $520 a month.  I just looked it up on drugstore.com...if we didn't have insurance, this mix would cost $636 a month. Woo hoo.  How's that for benefits.  Not.  Then we also have the regular visits to a psychiatrist who watches over this rather scary mix of psychotropic drugs we put in our kid every day.  I have no idea what he would cost without the insurance.  At least he's covered.  For now.

Let's do the math for 2010:

• Therapy: $120 x 52 = $6,240
• Meds:     $520 x 12 = $6,240  (interesting mathematical coincidence)

That's roughly $12,480 a year.  The median household income for Caucasians (that's the statistic we fit in) is $52,115.  In other words, if we were in that median (and we have had the combination of luck and skill not to be in that category) it would cost one-quarter of our income to treat our child.  And THAT'S WITH INSURANCE!!!  Good insurance.  Truly good in the sense of what is currently available.

But now I want you to consider something.  We have determined that the standard educational course is probably not right for Eldest.  Which means that, likely, Eldest will not go to college at age 18.  If she goes, I would expect it to be in her mid-20's.  What does that mean?  It means that as soon as she graduates from high school (I figure she'll be 19 when she graduates from high school) she will not have our insurance and, unless she has a full-time job, will not have any insurance.  What does that mean?  That unless we are totally successful in getting her healthy in the next two years, her therapy and her meds will stop.  Of course, we could pay for them privately.  Perhaps we will chose to do that.  We are in the category of people who have that option.  But for how long?  And how about the kid like mine who's parents don't have that option?

The reality is that most people who have the diagnosis she may end up with (she cannot technically be diagnosed until she is 18) don't truly get control of themselves until their mid-30's and/or about four-six years of therapy now that DBT is proving successful and is being used at earlier ages.  And without treatment what is the prognosis?  Multiple suicide attempts.  Addiction.  A continuing stream of failed, traumatic relationships.  An emotional roller-coaster and not just like PMS overly-emotional...like crazy.  Crazy.  When you add in Eldest's learning issues (ADHD and Non-verbal learning disorder/high-functioning Aspergers), her prognosis is truly a complete unknown to the medical world.

The story I am telling is just one girl's need for insurance reform.  She'd never qualify for affordable insurance under our current system.  She might not be successful at keeping and holding down full-time employment...at least the kind of job that has decent health insurance.

Tell me, just what is our country up to?  Tell me, HOW can we let it be this way?

Tell me...no, tell yourself, just what would you do?  What could you do if this were your kid?

This is my kid.  This is my future.  This is her life.  And, if we as a country don't or can't fix the situation then how can we possibly take credit for being the country we all want the United States to be.  The greatest, richest country in the world.

I ask this...if we keep the system the way it is, just what is it that is so rich about us?