Another Day

Lately, among other things, I've been dealing with what seems to be more than the normal share of Sam-related issues. These things seem to come in waves and right now, we're approaching high tide. Part of my problem is, I don't know how "normal" some of these "normal" issues are.

This particular tale, at least Part One, begins back in February. 

Last February, Sam (and I) received notification from SSI that he was due for a Medical Revaluation. (I touched on it here.) I won't get into the reasoning behind filling out forms to essentially verify that he's still autistic - mostly because: a) I'm not sure there is a coherent reason for this, and b) I've complained about this line of thinking (or lack thereof) plenty of times before. (And, I guess, c) I'm exhausted.)

Sam and I promptly filled out the all the forms, drove them down to the Post Office and sent them on their way to who-knows-where. Then, we waited (picture a cartoon anvil hanging by a slowly fraying cartoon rope).

Somewhere in between then and now (I think), we (I) received a notice that one of one of Sam's support agencies would no longer be providing support. It seems the State had handed the contract over to a different support agency - one that we could expect be hearing from shortly. 

Having a new support agency was not necessarily bad news. The new agency was replacing an agency which had originally been assigned to Sam's case several years ago. This "old" agency, which we'll call AOFC, was assigned to Sam by the Department of Developmental Services (or DDS, for short. Remember this. It will matter later on).

Anyway, I was less than impressed with AOFC - mostly because I could never figure out what support they actually provided. Sam was assigned a caseworker - a seemingly nice woman I'll call Bella. When Sam's case was first assigned to AOFC, Sam and I met with Bella for an intake meeting. We brought over a copy of Sam's neuropsych evaluation for her to keep, even going over a few of the major points. All went seemingly fine. But after that intake meeting, I never heard from Bella gain. 

Part of this may have been my fault. I was never on the phone to her every month or anything like that. But back when Sam was still in school, I emailed her and called her to ask her about the possibility of her attending an IEP meeting - and I never heard back. 

And after one or two other attempts, I gave up.

In fairness though, when I say I never heard from Bella again, this isn't exactly true. After several years of silence, I heard from her about nine months ago. She called out of the blue, just to "touch base to see how Sam's doing". I was shocked.

Other than that, that was it for interaction with Bella.

So, as I said, going with a new support agency was not necessarily a bad thing. Maybe Sam would be assigned a new caseworker who was a real dynamo. Maybe it would be someone with a wealth of knowledge and experience. Maybe it would be someone who actually communicated, someone eager to help. Someone who would return phone calls.

As promised, the directer of the New Agency got in touch with me and it turns out that she was looking forward to working with us! And not only that, it turns out that Sam's new caseworker would be... Bella!

It seems Bella had left AFOC, probably right after she hung up the phone from talking with me.

I told the directer that I felt Sam's case needed "fresh eyes" and when she asked why, I told her what I just told you - only with a little more detail. Twenty minutes later, we both agreed that, once the New Agency gets settled in, it would be a good idea for someone with "fresh eyes" to take over Sam's case.

Flash forward (but not by much) to a week-or-so ago, when Sam and I received another notification, this one from DDS. Only this time, DDS didn't stand for "Department of Developmental Services". No, this DDS stands for "Disability Determination Services". (At least they both use "Services", just to make it easier.)

The letter was similar to the one received from SSI back in February. I've included a portion of it here for your reading enjoyment (feel free to click  to enlarge... or just move along)...

Enough to relax you and lull you to sleep, unless you're me. 

The previously mentioned cartoon rope holding the previously mentioned cartoon anvil, was now fraying a good bit more.

After digesting as much of this as I could, I got in touch with Sam's other caseworker - this one, his job coach who works at the other, so-far-not mentioned-here support agency, and I asked her ask if she was familiar with this type of letter. It turns out that, no, she wasn't. 

I would like to say I was shocked at hearing this- but so far, this is perfectly in keeping with how these things always seem to go.

Not only was Sam's job-coaching caseworker unfamiliar with my letter, but it seems she also had just received a letter (plus form), hers from SSI. And to top it off, her letter (plus form), though different from mine, was one she was also unfamiliar with. 

On her form, this job-coaching case worker was being asked what Sam's prognosis was (from a job-coaching case worker???). Was he referred by a mental health professional (No, because, a) his disability isn't due to mental illness - read the top of your own form which states what his disabilities are, b) Sam was referred to this agency by DDS (not the first DDS, the second DDS), which you would know if you read the fifteen page form I had to fill out and, C) why are you even asking these questions - especially from a job coach! Read the damn fifteen page form I had to fill out! Read the medical records we had to release!)

Since the job-coaching caseworker was just as baffled as I was, I decided to get in touch with the New Agency to see if they could weave some magic shed some light on any of this. I emailed the director and waited anxiously for a response.

The following day, the director got back to be. She said she got my email - and was handing it off to Bella!  

Are you kidding me? 

For maybe once in my life, I displayed uncharacteristically good judgement and waited until the following morning before emailing a response. I replied with a straight-to-the-point, "To be honest, I'm a little stunned" - which I felt showed considerable restraint considering the fact that I was on the verge of completely flipping out.

The director called me that afternoon. Yes, she had remembered all that we discussed, but she was thinking... what, I'm not sure. 

Suffice it to say that for now, at least, she'll handle Sam's case.

As to the question of the medical reevaluation and how "normal" or "not normal" all of this is, she couldn't say. She had me email her the forms and the letters and said she would try to find out.

Along with the forms, I also emailed her a copy of Sam's last neuropshycological evaluation because, not only is this the foundation for understanding Sam's disabilities, it turned out the only thing in Sam's file, the file which came over from AOFC, the file which Bella was in charge of, the only thing in there was Sam's original intake form. Nothing else.

And as of today, that's where we stand. 

We wait. And we wait. 

And the rope continues to fray.