52. Round and Round We Go (The IDEA/IEP Follies)
54. Not Gonna Be Nickeled & Dimed

53. Conflicts of Interest: public school autism programs and "the system"

The use of the helmet and of restraints on Charlie, and the inconsistent reporting to us about these, raise serious ethical questions about the treatment of students in an autism/ABA program in a public middle school in New Jersey. But it's not only the autistic students who are being compromised by unethical practices. The way in which the autism program is set up and administered----the system---invites questioning, and especially in the area of conflicts of interest.

Achilles & Athena on a Greek case from http://www.theoi.com/image/K8.6Athena.jpg

(Hence, an image of Achilles in "conflict" and Athena interceding.)

After three emails, a special education administrator responded to our request for an emergency meeting. We were told that, due to Charlie's case manager being out of the district until next Wednesday, a meeting cannot be scheduled until then.

(So all of the duties of the case manager are in limbo until her return?)

The in-district public school autism program based on Applied Behavior Analysis (ABA) that Charlie attends is highly touted. We're not the only family that has moved into the school district for its autism progam and special education services. Last year, at least a dozen new students who are on the autism spectrum started in the district just as school was starting. 

My in-laws bought their house in this town over 30 years ago, but we moved here after Jim, while attending a fundraiser for a new private autism school  in December of 2005, asked someone what public school district had a program that had the same trained staff and supervision from consultants as one of New Jersey's small private autism schools. When Jim heard the name of the town---this town, the town that his parents had moved into just as he was starting college and which Charlie was used to visiting almost every weekend for many years to have dinner with his grandparents----Jim did a bit of a double take. It was something to find out that there might be a good educational situation for Charlie in a place he was already familiar with. 

The reasons for the program being said to be good weren't only because of the ratio of staff to students in the autism classroom: That ratio is more than 1:1, with there being one aide for every student plus a teacher. Further, the behaviorist who is the program's consultant is a psychology professor at a small college in northern New Jersey, a college at which one can earn a Master's degree in ABA. One can also earn a post-baccalaureate certificate in ABA, and a Ph.D. program wasrecently started. A number of the school district' teachers, therapists, and aides are enrolled in this program. Apparently, our town's school district---with said professor as its ABA consultant---is a site for students in that northern New Jersey college's ABA programs to get training and experience in. 

Staff with training and, it seemed, good supervision: These seemed to bode well for Charlie's education. It seemed a clear advantage that, with staff with such training (and academic instruction), when (behavior) issues in the classroom arose, these could be addressed on the spot. Charlie's previous and current teachers were getting their Masters and Charlie was a participant in his previous teacher's Master's thesis (on taking children to church). Compared to some of the aides Charlie had had in another New Jersey town, the experience of the teachers and aides seemed more than adequate.  

Last school year and this school year (all not quite two weeks of it) suggest a more complicated picture.

Charlie has the same teacher this year as last year and it was she who, in October of 2008, first started talking about placing Charlie in a "temporary residential placement," specifically at Bancroft Neurohealth's Lindens Unit in South Jersey. We did not think this an appropriate placement and there was a meeting. 

The meeting was to be held in the office of Charlie's then-case manager. Charlie's current and previous teachers were already present when Jim and I entered. We had been asked to meet first in the office of one of the Supervisors of Special Services. The district's ABA consultant, the above-mentioned professor, was also present and the ensuing conversation was interesting

(So interesting that its content is worthy of more discussion, later)

We then all went to the then-case manager's office. The two teachers were still there and, as Charlie's previous teacher said a few sentences about how his previous year had been (it was one of his best; this was the year he was taking cello lessons with the school's music teacher and going on farm field trips and calling for one guy aide in particular; Charlie adored him)---as Charlie's previous teacher spoke, I felt very aware of the fact that the professor (the school district's ABA consultant) was a professor and advisor for both his previous and his present teacher. In other words, at a meeting at which crucial and life-affecting decisions were being made about our son Charlie's education, there were some conflicts of interest. 

It's not only that the professor was grading and otherwise evaluating and assessing her graduate students (i.e., Charlie's previous and present teacher). As a professor and advisor, she would be a source of recommendation letters and of professional contacts that could be---are---crucial for one's career. Her influence could extend years beyond the time hers students/Charlie's teachers studied with her: What if they needed letters when they were up for tenure? or for a fellowship or grant?

What might you say at a meeting about a student who was floundering, despite your application of the "behavioral principles" you had learned in graduate school, with his parents present and, also, with your professor present---a professor who had taught you much about ABA and teaching autistic children, had taught you much related to your career? 

You would have to choose your words carefully. 

Whose interests would you feel you had to put first?


Image of Achilles & Athena from theoi.com.

Comments

farmwifetwo

I have little to no use for ABA. I do believe in using token style programs/social stories and other such tools to help teach proper behaviour and socialization skills.

But the unending, 1:1 ratio, rote learning, discreet trials - the stuff Harold (Autism in NB) thinks is wonderful - IMO is the cruelest thing you can ever do to a child and my child to this day is VERY suspicious of new therapists after a year (they were in our house for 8mths the rest was daycare/school) of dealing with ABA therapists. I truly think he hated them more than I did... he's only ever had one behavioural write up... 5 actions against others to his Male T and I kicked him out permanently that same day. He was 4.5yrs old and it's 3+yrs later and his peers are signing up - without being forced to - to play on the little kids side where there's a fence to be his recess playmate.... he's not voilent at all.

Are you certain this program style is appropriate for Charlie?? I know it would not be for my son with Autistic Disorder.

Elise

I am concerned about the conflict of interests from a civil rights perspective. Did you contact a lawyer or advocate? How about the local office of OCR? What was their take on the issue? Does ASPEN have a recommendation? I am sure they have seen this before.

Emily

Hell, yes, that is a conflict of interest. Looks like you're David arrayed against a monolithic Goliath, basically. There should be an *outside* consultant. The conflicts of interest here are practically consanguineous, they double back on each other so much.

Beth

Gosh...this makes me wonder if that residential placement that was recommended is another rotation site for the college and they need more subjects, I mean, residents
...and I'm not usually a conspiracy theorist!

Niksmom

I think someone already suggested it elsewhere...have you contacted NJ Bd of Ed? This smacks of conflict, for cure!

Nicole

good luck. Education, especially special education, is ripe with conflicts of interest.

a parent

The more of this story I hear, the worse it gets. It seems like the attitude of not listening to or valuing your input has something to do with the way autism therapy is being taught, at least in your area, if not universally. If you start by thinking of the autistic child as a pawn to be manipulated, measured and ignored if they don't fit into your theories of autistic kids, is it surprising that they start to apply the same rules to parents? You had been talking about a non-public placement (Maryland speak for getting a school system to pay to send a special needs kid to a private special ed program). Do you know that all the schools your looking at haven't been infected with these attitudes? And the residential placements? At this point I can't imagine having any trust in what they do when you're not visiting.

Gahhhh...be strong, because this seems like a long and tough battle.

feebee

He loved his old school. I remember your posts! I want it to be like that again for Charlie. I know you do too. Keep fighting!

Bonnie Sayers (autismfamily)

I would definitely pursue going to the State Bd of Ed on this one. Have you sought advice from Wrightslaw? I agree with others about the placement, probably part of the same network.

Neither of my kids have done any ABA? I would move him to another school? Is the aide an employee of school or district?

Kristina Chew

@Beth,
you are too right. Bancroft is also a site where students in the ABA Masters program can get training and experience.

Kristina Chew

@farmwifetwo, I think the ABA type of program was appropriate for Charlie when he was younger. It's the ABA as practiced in our school district that has become a huge issue. It is a very overly structured program; a couple of years ago, our Lovaas consultant (yes, our _Lovaas_ consultant!) said that she thought this program was very "tight" and that there needed to be more room for, well, fun. We had a good consultation with a neuropsychologist last Friday who talked about kids, and programs, getting "DTT-itis" and how kids aren't really generalizing skills learned in a DTT format. He talked a lot of about natural environment teaching and, too, _fun_ --- there is no at all in the program Charlie is in.

This program seemed ok certainly for Charlie's first 2 years in it. Things started really falling last year and I've been reexamining and reflecting a lot......I did look at all those other schools over hte summer for a reason!

What Harold has talked about as far as ABA is just one part of it---the part that gives ABA a bad name. Whatever we're calling it, it's time for Charlie, and us, to move on.

Have yet to contact the NJ Board of Ed. I am trying to write up my thoughts and observations as cogently as possible.

Kristina Chew

The ABA consultant to our school district is on the board of one of the private schools that we were interested in a few years ago; not anymore.

The director of another of the private ABA autism schools that I visited this summer is an adjunct professor in the program at the college where our district's ABA consultant is a psychology professor.

Also an adjunct in the program is an administrator with NJ's biggest autism organization. On a home visit in the spring, Charlie's teacher said that this administrator said that Charlie would be "good at Bancroft." (I'm not going to tease out what that means.)

Jen

I live in a district with a "highly touted" autism program as well. We don't the tie ins to a college, but I know of plenty of people who moved to get kids in here. We used to give excellent services, and people from other districts used to come to see what we were doing here. For the first few years I worked with students from this program, it was great. I watched two years ago as one consultant said no to the changes they were trying to make for the child I still work with. I watched last year, and am watching this year, as he flounders, learns nothing, loses skills, and they continue with an ineffective behavior plan. It seems that, along with big names, all too often come big egos. I wonder what the previous teacher was doing right, because clearly, she was doing something right, and if they have given serious consideration to that.
Also, I looked at that college where everyone in your district seems to attend. I'm now even more unimpressed than I was before with the college everyone there seems to be attending. It seems I made a good decision to go somewhere a few hours farther north. I'm attempting to rearrange the name of that place to spell conflict of interest, by I don't think it's possible.

autismviile

Just wondering if they ever utilize incidental teaching or pivotal response teaching, two very well-researched forms of ABA. They are definitely fun... and make a huge difference for kids who don't need/benefit from DTT.

AnneC

All this stuff you're describing re. Charlie's unfortunate school situation right now is EXACTLY the kind of stuff that autistic adults (regardless of supposed "functioning level") have been trying to fight for years. It really all comes down to respecting disabled persons and considering said persons worthy of respect in the first place, and not writing them off. There are massive societal problems right now wherein people ARE getting written off -- basically once we get past the "cute kid" phase, if we don't seem "recovered" enough, we get shuffled into "containment" systems moreso than anything to do with education and/or personal development.

I am glad you don't take the view that this "containment" emphasis is somehow good or right for kids like Charlie, as it is very clearly and obviously NOT appropriate for him or others.

I wish more people would get such a clue, and also would realize that when autistic people ourselves go on about respect and ethics, etc., it means something, and that while we obviously cannot speak for anyone else (spectrum or not), we do have a sense of the territory in some form a lot of the time. E.g., as a kid once I was being sent out in the hall a lot, or stuck in the back of the class so teachers would "not have to deal with me". And nobody at the school batted an eye at this, it seems like many people assume "if X is happening, there must be a good reason". When often the "reason" isn't good at all, but rather, linked to inertia, lack of imagination, and all-around fear of "liability", etc.

Regina

"...our Lovaas consultant (yes, our _Lovaas_ consultant!) said that she thought this program was very "tight" and that there needed to be more room for, well, fun..."

Duh. Without fun/choice/related, it makes me kind of wonder whose behavior is being reinforced (hint: not Charlie's), and program emphasis. Surely these folks have heard of "motivative operations", "contingency management", "noncontingent reinforcement", and "countercontrol", since those should be well known principles - seems like rather than seeking to make lemonade from lemons, the goal is to have a very compliant lemon, no matter what the cost.

Behavior has communicative intent and behavior is lawful!

Paul

The teacher student ratio is a concern.

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