Tuesday, November 3, 2009

Falling Through The Cracks..........


When we made the decision to adopt, I made a promise to my children to be their biggest advocate. And by golly, do I try. I research, I ask questions, I seek out professionals and follow their recommendations to a t. But, it seems like the professionals never got my memo about advocating for my children! It has taken me three months to get a letter stating that my son’s health insurance does not cover speech therapy so that the Regional Center that provides speech, occupational and physical therapy services for children 0-3 yrs can start providing services. My son’s state funded health insurance plan advised speech therapy was not a covered benefit, but it was not their policy to provide such a letter – but the Regional Center could not provide the services without said letter. I called the big guns to break the impasse – my son’s social worker, who sought the assistance of her supervisor, the children’s case manager at the Regional Center and the county’s public health nurse. I even offered to draft the letter and have them just copy it to their letterhead, but on no – that was too outside the box thinking for a government employee (I have license to make fun of govt employees seeing I am one of them). When I implored the top dog – the manager of the “customer service” unit of the health plan to help with said letter and I told her about the 10 different calls in two months to get it, she huffily said my son was just one of 65,000 members the plan served and it was not like he had had a stroke and needed speech therapy! Obvious why the customer service skills of her underlings is less than stellar! Wonder what she would say if she headed the customer service unit of my private health insurance which covers more than a million members in my state alone! For all our efforts, I finally got a letter stating that yes indeed – the insurance plan did cover speech therapy, but my son would have to re-evaluated by their speech therapist! Back to HOME. Three months after the battle begun, baby boy has another evaluation this week, but wait – we were warned to temper any high hopes that speech therapy would commence soon – the agency they contract with for speech therapy advised that they have a long waiting list and sometimes it can take two to three years for a slot to open up!!!! A far cry from the Regional Center where the Speech therapist only had one other client and we pretty much had our choice of time slots. Okay, one step at a time......

Speech therapy aside, baby boy also needs to see a developmental pediatrician. This is obvious from observations by this advocating mama and scary confirmations by his early intervention specialist. I about checked myself into a psychiatric ward after calling his pediatrician’s office weekly for a month trying to speak to the pediatrician to see if our concerns were warranted and if they were, for advise on our next course of action. The pediatrician’s “gatekeeper” would always insist that I had never called with this concern and that it was the first time she was hearing about it! I thought I was losing my mind – it is one thing to hear voices, but to actually be having conversations and vividly remember them, but the other person insists that you have never had such conversations??? Scary. Anyway, I started journaling the date, time and who I spoke with and reading my notes back to her during my once a week follow-up call before the “gatekeeper’s” memory was jogged. Phew! After two months, I never got to see or speak to the pediatrician –the gatekeeper said he is a very busy doctor (which I believe since he had to be woken up from a deep sleep last week when we went in as my son was having an asthma attack). But, the pediatrician had a good solution – I could write a letter with my observations and the observations of the early intervention specialist and he would read the letter in between patients! And I thought pen-pals was so yesterday. Anyway, I asked if he could review the notes that his “gatekeeper” had written down and give me his feedback and would you not know it – we immediately got a referral to the children’s hospital for baby boy to see a developmental pediatrician! But have no fear mama, baby boy will settle the scores for you. Last week when we had a medical emergency, my super sweet, gentle, cuddly baby boy who can never hurt a fly turned into Hercules and pummeled his pediatrician when he was trying to examine him! I know baby boy is attached to his mama, but putting the pediatrician in a headlock, knocking him in the eye and trying to jump off the exam table so that he can go into mama’s arms? He must have sensed mama’s displeasure at how hard it has been to get him the help he needs. Now if only the developmental pediatrician’s office can figure out which clinic we need to see her at – she practices at two different clinics at the same children’s hospital - one is a high risk follow-up clinic due to baby boy’s pre-maturity or a developmental clinic (neural, auditory, and processing concerns). They called me last week and told me they would call me back this week once they figure it out! Maybe we can toss a coin? I mean, it is at the same hospital and the same doctor? We are even willing to meet in the middle-on the hallways between both clinics – please just help baby boy!

Even with all the hours I have spent trying to advocate for him, we are still not getting the services he needs. How easy is would it be for foster care parents to give up when trying to deal with an unwieldly system that puts bureaucracy over the needs of the children?