Model Letter to 12-Step Based Treatment Provider

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Introduction to the sample message requesting FASD-appropriate accommodations in a 12-step treatment program

Here is the email I wrote to the Clinical Director of the __________ Outpatient Substance Abuse Treatment Center and the individual therapist assigned to my daughter. (I sent it) a week in advance of our meeting to discuss these requests for accommodations.

Some of the things requested would apply to all situations (like training for all staff); others are specific to my daughter and her particular issues and place in life right now. For example, items #2, #4 and #7 focus on my daughter’s particular challenges...your (loved one with FASD) may have other arenas in which different changes in the program structure would be more effective and helpful...Items #3 and #8 relate specifically to the fact that my daughter is eligible for Medicaid/Medicare services; and in Oregon, where I live, that means that she has...a case manager who accompanied me to the meeting where the accommodations were discussed and allocates the money to the treatment provider (and supervises her as well) and a...‘helper person’. These accommodations would probably not be relevant in other situations where these services are not in place and/or where there is court involvement.

The accompanying bibliography, which I sent to them at their request, is available as a download, below. It was at their request that I compiled as comprehensive a bibliography/resource list as I did. You can check out the various links, and perhaps choose those articles and links that you think are the most helpful in your situation.

Note: I tried very hard to present what I gave to the treatment center in the bibliography AND in my request for accommodations for my daughter in as collaborative a way as I could. At one point I came across a quote which essentially said that if a person with FASD did not succeed in treatment, it was the treatment center that had the problem. I RESTRAINED MYSELF from including that quote, much as I loved it, out of a concern that if I came across as too adversarial, I would lose the battle before I even got started. However, some of the articles in the section about adaptations that treatment centers need to  better serve folks with FASD take a pretty strong stance -- to their credit. Use at your discretion.

Example message to clinical director of 12-step based treatment program

From: (name/email address)
Sent: (Date)
To: (email/s of Recipient/s)
Subject: Re: proposed accommodations to be discussed...

I would like to emphasize, as I tried to point out in the phone call (setting up the meeting), that I hope what I have written will be a starting point for discussion of how best to intertwine what we know about (my child's) brain injuries (and those of others like her) with the nature of your program and 12-step work. Because of __________ (individual therapist’s) experience working with (my child), I especially am looking for (their) input on which arenas were the most problematic for (my child) and how they might be addressed better, now using this FASD lens.

  1. Training for all staff in FASD
    Changes in group structure: written materials should be worded concretely, not abstractly; verbal materials should be presented in written as well as verbal form, with checking for understanding in ways that don’t put (my daughter) on the spot. Generally speaking, groups that focus on abstract concepts will not be helpful, and reformatting presentation of materials with the understanding that ‘learning from the past’ and generalizing from experiences of others to her own are the most difficult areas for her. (My daughter) has said that hearing about the successes of others is helpful; but hearing about the problems of others she does not find helpful, because of difficulties with generalizing from their experiences to her own life. Be sure that the group leader(s) understand the effects of (my daughter's) auditory processing disorder on her group participation and her ability to fully understand what is going on in group, and that therefore there are ways in place (as above) to address/accommodate this.

  2. Coordination of work in the program with her (helper) and (case manager) through ______________ (name of case manager's service agency). (My daughter) did not have these services in place before; and now that they are in place, they can powerfully augment program services. ____________ (name of case manager) can speak more to this

  3. Development of a plan to address (my daughter's) chronic... no-shows and lateness. (They are) issues overall in her life that she needs to improve in... (Having) her (name of helper) bring her to some appointments, but not to all (may be) one accommodation. Making schedule changes as infrequently as possible is very helpful.

  4. Pair (my child) with a mentor to build in a peer-validated involvement in (the 12-step program) and also to help her visualize how long-term recovery looks. Understand that (the 12-step program) will provide her a solid community after she is not longer in the program, but she will not be able to get to (the 12-step program) meetings in any regular fashion without a mentor.

  5. The longer the time (my child) can spend in the program, with the most repetition of concepts, is most helpful. The core of her successful learning is REPEAT, REPEAT, REPEAT. However, this needs to be done in a way that she does not feel she is being ‘punished’ by asking her to stay in the program longer and that she is just being forced to ‘repeat a grade’; so, content needs to be changed enough to be different but still basically covering the same concepts. Perhaps she can move into a mentor role for others as she stays longer?

  6. Incorporation of the perspective of (my child's) ...individual therapist in adding in those accommodations and programmatic modifications that would be most helpful... Allowing her to continue with the same therapist with whom she feels a positive connection was a very appreciated accommodation that already has occurred.

  7. Continue to proactively work with (my child's) (case manager) and parent(s) to problem-solve (issues) as they arise and before they become large and jeopardize her overall success in the program.

Of course, we also want to incorporate the perspective of you, ______________ (name of Clinical Director) and _____________ (name of individual therapist), in terms of thinking not just of this particular client but others with similar issues that have come through the program and what programmatic changes and accommodation would have increased their success, especially in light of the (FASD) readings I sent.

I also want to acknowledge that your openness to (accepting the unique challenges of FASD) and your willingness to join with us in this meeting is one huge accommodation ALREADY.

Looking forward to our meeting tomorrow. I know we have a very limited time so _________________ (name of helper) and I will be thinking about how to be efficient with our time. Your perspective on how we can best get through this agenda in the time we have is of course helpful as well.

After the meeting

At the meeting, they agreed (in theory at least) to all the requests except for the staff training which they said had to be addressed by their Executive Committee. 

I am cautiously optimistic that the changes my daughter needs will be implemented AND that this discussion will open their eyes not only for my daughter but also for others living with FASD (diagnosed and not diagnosed) and those coming through the program who may not have someone able to advocate for them. 

Anyway, hopefully you can take some of this and adapt it to your situation.

Written by S, a parent in Oregon

Valerie Lipow,
Sep 3, 2012, 2:08 PM