No really...Where is it?

So first of all, I just want to say thank you to everyone reading this blog!  We are almost at 1,000 views!!!  I'm so grateful to all of you for reading, sharing and listening to our story as crazy as it gets.  Let's keep it going!!

As you all know, we have been going through Criterion Early Intervention for all of Grayson's speech, play group and other needs.  This also included at one time having an OT (occupational therapist) come out to the house and do a full assessment.   I believe I wrote an update on this visit back in July.  Since we are trying to make sure we have all our t's crossed and i's dotted for his transition/IEP meeting in February, I figured I would check in with our current speech/case manager and work on getting a copy of that report for our own records as well as for the school.

In fairness to Criterion, I had forgotten all about the report up until recently.  Honestly, there has just been too many other things to focus on, like my new job, Wally's loss of his, Grayson's third case manager in less then 18 months and his transition meeting to preschool.  It was no fault of his newest case manager (let's call her Dawn) that she was completely unaware that this assessment had even happened.  But imagine my surprise, when on Tuesday night at 8pm, there's Dawn on my phone telling me she had been searching through his file and while there was a copy of the home note the OT had given us a copy of at the time, there was no filled out assessment, there was no written report and there was no paperwork ever stating that he had actually had one completed.

On top of his missing paperwork, I was then told that apparently the OT in question no longer worked for the company.  I could get no more information from Dawn other then a "she's no longer with us" statement that was leaving a very bad taste in my mouth.  Who was this woman who came into our home?  Who looked at my child, provided me in depth OT advice regarding his treatment and had filled out a multiple page questionnaire with both mine and his information?  Where was his paperwork that contains specific information to him, his diagnosis and who knows what other personal information?  Why does this woman no longer work for Criterion?

I ended our phone call attempting to sound like I felt I was in good hands, that Criterion would work on it.  We had another OT coming out on Friday for another assessment, who was working hard to get a report to the school district before his meeting only 2 weeks away.  But while relaying this information to my normally calm, understanding and much more level headed husband.  His response of "But where is the paperwork?" made me start to question this myself.  We talked about it further the next day and it was decided.  I needed to contact the director of Criterion myself and see what we could find out.

I called "Mary" on Thursday morning, leaving her general voicemail saying I was concerned about the OT situation for Grayson.  She left me a direct phone number to reach her at and said she was aware that another OT was coming out to the house the next day but would be willing to discuss any questions I had.  I called her back as quickly as I could.  We had a short conversation but I was clear none the less.  I was concerned about the status of my son's information and paperwork.  While she gave me a multitude of apologies and promises that they were doing everything in their power to find it, at the end of the day she didn't know where it was, she couldn't promise me that this woman didn't still had his information, and they were currently unable to reach her to confirm either way.

Ladies and Gentlemen, I would like to introduce you to our first HIPAA violation.  "HIPAA is the federal Health Insurance Portability and Accountability Act of 1996. The primary goal of the law is to make it easier for people to keep health insurance, protect the confidentiality and security of healthcare information and help the healthcare industry control administrative costs." While this wonderful little ball of wording doesn't necessary seem like it would be tied in with our current situation I can assure you it is.  Since my first day at BEACON I was taught about HIPAA, a former secretary of my current school was let go because of a HIPAA violation (one as simple as not BCC'ing the email addresses of parents in a holiday party email).  

While confidentiality in a situation like this may not seem all that dire, I mean she really only took the assessment which she filled out in the first place, this is still of great concern to us.  We have gone through 3 separate service coordinators, one of which was removed due to her (shall we say) poor performance.  We have had an OT come into our home and collect private information of our young son, we have no idea if she had access to any other information in his file such as social security numbers, health care identification or other things that could provide her the ability to access any number of things under his name.  

I shouldn't have to be worrying about where my son's paperwork is at such a key point of his development.  Our focus needs to be on his treatment plan, his transition to preschool and making sure he is getting the services that he needs.  It should never be about where this missing paperwork has ended up, why they never had any record of him getting the assessment in the first place, and why they are simply considering it a poorly filed situation when she was so clearly able to get the first form filed in the right place.   While I truly hope to receive a phone call this week that tells me they have found his paperwork and all is fine.  I know that this is most likely not what will happen.  I can tell you though.  If anyone asks, Criterion Early Intervention, is not a place I would recommend sending your child, nor is it a place any of my future children will ever go.