The system sucks, or 'But I'm his MOTHER!!!!!'

People say "Oh, people just live off the system, collect cash" and I tell you - IT AIN'T THAT EASY.  Seriously, I don't know or understand how people do it.  I have worked 'in' it for over 15 years and it's ridiculous how truly difficult it is to navigate, still.
When O was diagnosed, he became eligible for all sorts of 'public assistance.'  Both my husband and I missed many, many days of work for appointments, not to mention the money spent on co-pays, parking, gas, etc.  When he first became diagnosed my mother encouraged me to sign up, but I couldn't bear doing it.  It seemed - defeatist, accepting of the diagnosis, I couldn't bring myself to make the call - bring myself to go through the system I had tried to help others navigate.  After a few months I finally came to a place that was like "fuck it, this sucks regardless, but I'll apply."  Went to Social Security office on June 15th.  That place is SCARY, and the waiting room is so smelly with all the dirty peeps.  So I applied, and during the application process an application was 'automatically' submitted to Mass Health.  I was overly prepared with full documentation of everything (including car registrations, paystubs, old taxes, every doctor's report, service plan etc) and the case manager reassured me I was so organized I should hear in 30-60 days.
By November, still nothing.  I called Social Security, and received a call back from the unrelated and someplace else Social Security DISABILITY examiner who told me 'the physician reviewing Owen's records needed more updated information."  I was like "WHEN I APPLIED 4 MONTHS AGO IT WAS UPDATED!!"  Plus, Owen has Fragile X - it's a permanent diagnosis that isn't going to change!  But, I sent more information, and just to be an asshole sent 3 months of weekly progress notes from my 3 different Early Intervention workers. I faxed over 60 pages of information. 
Finally, he was accepted to Social Security.  Since then I have received numerous 'letters' from them. There is a maximum amount he can receive, and the more money I make the less he receives.   They require the 'mother' to send in paystubs, and the amount of money I make fluctuates.  So therefore I receive a giant letter each month telling me how "Owen's payments will be changed" due to this.
Meanwhile, no word from Mass Health.  About a month later I get a Mass Health insurance card in the mail, a brief letter saying "Welcome to Mass Health" but there no other information included.   Owen is eligible for  Mass Health as a secondary or 'back up' insurance because he already has my primary private insurance that will reimburse providers, and Mass Health will pay co-pays on visits and medications.  I used his card for an opthamology appointment he had on December 6th, all was peachy and the card 'worked'.
On Friday, December 17th, Owen gets a package in the mail from Mass health.  I open it, and it says "You MUST call Mass Health by December 16th or a health plan and a doctor will be chosen for you!" The letter is dated December 2nd, no postmark on envelope.  I am immediately pissed, and think of all the clients I have talked to in the past who told me "My insurance lapsed, and I never got the letter!" or "They sent the letter too late!" and I always thought "Yeah, yeah, sure it's THEIR fault."  Well HA HA HA to me!!! Since I got the mail after 5pm, the office is closed and I have to wait until Monday.  (Plus isn't it weird that I have already used the card weeks ago and NOW they are telling me to choose a plan?)
Monday I call, first thing.  I have to be transferred a hundred times, CAN'T I JUST TALK TO A PERSON, until I am connected to some dude and all I can hear is the million of other people in the same room as he is, answering calls, and I can hear their sides of actual conversations "There are several different types of plans ma'am" I hear a deep voice say, I wish I was talking to that dude because I can understand/hear him perfectly.
I answer questions, and have to ask my dude to repeat his because I can't hear him above the din behind him and he talks softly.   Finally, after I repeat the same information 7 times, he tells me "Ma'am, I don't have you listed as head of household and due to HIPPA laws I can't give you any information.  And since Owen already has health insurance he isn't eligible for health insurance." I was flummoxed "Um I am his MOTHER! I birthed him, he came from my womb, and I have handled ALL his health insurance information.  Plus it's an AUTOMATIC application through Social Security, which he has, and funny, I have a MA Health card in my hand for Owen right now."  He says to me "Well, he is enrolled but he isn't eligible."
"BUT THEN WHY DO I HAVE  A CARD???"
"I can't tell you that due to HIPPA laws!!"
I start laughing, both furious and dumbfounded.
"OK, how do I become his mother and be able to access his information?"
"You have to fill out an application to Mass Health."
"But I already DID fill out an application, he has a Mass Health and I have a letter welcoming him to the plan!"
I then ask "Who is listed as his head of household, can his father access this information?"
"I can't tell you that ma'am, due to privacy laws."

Are you fucking kidding me? Seriously, this is the shit you can't make up. 

Oh, to look forward to a lifetime of negotiating this nightmare system!!!   AND I have WORKED with health insurance my whole career and received trainings from social security advocates! !  I have FRIENDS who work at Mass Health!! Seriously, no one can "live," and by that I mean really live and thrive, by relying on public assistance.  And the thoughts in the back of my head - who will do this for Owen when I'm gone? Will he have to live on this?