The Prof Is In

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Re: Clarifying the alphabet soup :-)

From: Nan Bernstein Ratner
Date: 12 Oct 2010
Time: 16:24:03 -0500
Remote Name: 129.2.25.203

Comments

My apologies for not seeing this earlier. For those of you with good visual memory, I was not originally in the mug-shot line up of "experts", but got pulled in to answer Ora's original question.

Let's start with the abbreviations.

DSM is the Diagnostic and Statistical Manual of the American Psychiatric Assn. It is currently in DSM-IV (version in use), but extensive, multi-year work has gone into a pending revision.

 APA controls the manual, which is used to code diverse disorders once considered within their sole purview (e.g., childhood communication disorders were coded as "infantile speech" in early versions, suggesting that they were a manifestation of underlying psychological problems). APA has solicited other groups to comment on the upcoming DSM-V, though they don't have to listen to anyone, because it is their publication. But ASHA has been invited to participate and has been very active in providing feedback, especially, but not limited to, coding of autism, and some other communication disorders.

The ICD (International Classification of Diseases) is actually a HUGELY important coding scheme, used world-wide, and by most disciplines that have any health focus. It provides numerical codes for tracking and justifying local reimbursement schemes for a dizzying array of human conditions. The rest of the world is currently using ICD-10, but the US protested that we needed more lead time to gear computer programs up, so we are still using the ICD-9 until a few years from now.

Finally, as I indicated earlier, but perhaps this background will clarify somewhat, there is a sort of  "gentlemen's agreement" that the codes in the DSM and the ICD should line up and be similar when the condition under discussion is coded in both manuals. This of course is true for a wide range of disorders. There are pretty decent informational articles about both of these manuals out there on Google in many locations. I can try to recommend specific ones if folks aren't happy with what comes up readily in searches.

When ASHA got the request to try and move/enlarge the current stuttering codes, the thought was to start with the ICD-9, because the APA had been somewhat resistent to changing the code in DSM in prior correspondence. Since the two are supposed to match eventually, we decided it might be better to start with the ICD, also because changes to it are "vetted" or responded to by many other organizations (in our case, Academies of Pediatrics, Neurology, etc. made comment, as did our Office of Veterans' Affairs and other groups). They were definitely more interested, in our first proposals, than was APA, and this helped the initiative get some traction.

The process for making changes in the ICD-9 stays in the US, because we are the only ones using it now (:-(). The physical process is to submit a brief to the US Centers for Medicare and Medicard (CMS),who oversee the process. In this case, ASHA worked with me and with Professor Luc De Nil, who had been charged by the ASHA Special Interest Division on Fluency, to try and make this happen. The brief was reviewed, we submitted some supporting letters from NSA, SFA, IFA, and other groups, and was scheduled for public hearing.

The first public hearing was held in a darkened auditorium, where people literally sit for two days to consider how to add codes for new and novel conditions, or re-code old ones. It is not all that stimulating, frankly, until it is your turn. Then you get about 5-10 minutes to explain what you want, and mikes go live in the auditorium and even on open phone lines for those who follow this stuff. APA of course showed up, and was still not in favor, although other groups expressed support. It was then necessary, over the next year, to oobble out an agreement that was acceptable to all parties, and the final code changes that were released on Oct 1, 2010, were the result.

Without going into too much detail, here is the set of changes in a very brief nutshell.

There was only 1 old code for stuttering (307), under Mental Disorders, and in a bad section, as people note (near bedwetting, masturbation, etc.) Quite Freudian in feel, frankly. We added three new codes, and limited use of the old one in the following ways: We made the DEFAULT code (in other words, if people write stuttering as the diagnosis, and nothing else, this is the code that will be used) a code in the 315 series, which codes most of the other speech and language disorders in children, but added a term not usually seen in those codes - childhood ONSET stuttering - because insurance coverage has sometimes been denied in this series because the problem can be considered developmental or pre-existing.

We added a code for fluency disorder following stroke. Then, because a bunch of groups kept mentioning fluency problems in too many conditions to make much sense, we added a code in the 700 series for fluency problems that were merely symptoms of other major conditions, so that one could code for fluency treatment secondary to other medical problems.

Finally, we limited the old 307 code to "fluency disorders not coded elsewhere", which, by process of elimination now made that entry essentially only applicable to stuttering that seems "psychogenic" in origin, in which case it is not so bad in that section of the ICD.

A good question is - what about the DSM? The last public information about the DSM (I can supply a link, but this is getting long) said they were not considering changes to the 307 code, but that was BEFORE the ICD code changes were approved. We have had private email correspondence from APA that does reassure us that they won't forget to "take care of this" in the new DSM revision (again, still in process). Because they still have two of the four codes (the default code and the old code) covered by the DSM, we think they will act in good faith to do this, as they have said they will.

THEN, if any of us still have any energy, we will need to tackle the ICD-10. This will not be entirely trivial, although a lot of the heavy lifting will have been done, because it had already changed some items in both the old 307 section and the communication disorders series. So, we will have to make sure everything fits properly with revisions that have already been made, but we are very optimistic.

One set of questions was about who had input to this process. I hope I have shown that we did ask for broad support among stuttering organizations, whose individual steering boards provided support letters. The issue was covered at multiple ASHA conventions, particularly in Special Interest Division meetings, to make sure ASHA members were on board. We do think we tried to be responsive to everyone, and in fact, it was the consumer groups who asked us at ASHA and the Specialty Division, to do this (move the stuttering code) - it was not initiated, this time, by ASHA itself. They only helped to make it possible. And so, before signing off what should perhaps have been a conference presentation itself, I would like to personally thank Steve White of ASHA, who sat through all the endless meetings and negotiations patiently and bird-dogged it to what we feel is a good result.

If this doesn't help the person who was upset with the thread, can you please tell me specifically how I can help provide clearer information?

Thanks, Nan


Last changed: 10/23/10