My letter to the DOJ regarding the JRC over 1 year ago

August 21, 2013

Department of Justice
To Whom It May Concern:

I am not the first person to reach out to ask for help with regards to the Judge Rotenberg Center (JRC), but hopefully I will be the last. I am a Board Certified Behavior Analyst (BCBA), and recently had the opportunity to visit the JRC for a two day visit on April 24th and 25th. After my visit there, I will be forever changed.

I am trying to express my concern, not for the more obvious reasons as others have presented to you, because of the use of the Graduated Electronic Decelerator (GED) device, but instead because the agency does not follow best practices in the field of Applied Behavior Analysis, and by not following best practices they increase the probability of clients having to remain with them and remain on the device, almost guaranteeing their population/income. Additionally, I want to point out the lack of science employed at a place promoting itself to be the opposite.

The JRC does not utilize best practices in the area of Functional Assessment of behavior. Please review the video on the JRC website. (From the Home page, Contents, scroll down to Optional Court Auth, scroll further and click on Presentation at FIT 2011, Click on video #1, start video at 7:00.) Below are highlights of that presentation.

Dr. Israel states in this presentation,

“Positive Behavior Support people have carried the day and aversives are now largely either banned by regulation or law or so politically incorrect that nobody wants to use them or publish about them anymore…Journals no longer really show what the most effective procedures are, they show what the most effective procedures are that are politically correct.”

JournalPolitcalCorrect

I am positive that those individuals published in those journals would disagree with Dr. Israel’s stance that they are driven by political correctness when designing effective interventions for the individuals they work with. Dr. Israel does not provide any research to back his opinion that there has been a movement away from aversives, or that interventions that do not use aversives are less effective.

functionalassessmentcoverall

Standard procedure in the field of behavior analysis is to conduct a functional assessment of an individual’s maladaptive behavior in order to identify the function, design a treatment protocol, and teach alternative functional ways that the individuals’ needs can be met. Functional Assessments are conducted through direct observation of the individual in multiple settings, interviews with those close to the individual, review of evaluations and/or assessments, data collection, and if those procedures prove inconclusive, experimentation in a safe environment where hypothesis of the function of the behavior may be manipulated in order to ascertain a precise function/cause and intervention. Without knowing the function to a behavior you can not address the behavior, nor teach an alternative.

Dr. Israel’s stance on what he terms, “standard functional assessment,” has no research to validate his claim that it is equally as sufficient as currently accepted practices. In the same video as referenced above, Dr. Israel states, “from my perspective the safest procedure is simply to cover all the bases. Just arrange the environment so that you’ve covered all the functions…(reads from the above slide)..When you follow this approach, as we have, then the standard type of functional assessment adds absolutely no additional information or strategies that have not already been taken into account.” There is no research to back Dr. Israel’s approach to assessment. In addition, it is not ethical or necessary to remove access to all these things, attention, escape or tangibles, on the assumption that one of these may be maintaining the behavior when we have methods for finding the actual function and therefore the appropriate solution/intervention.

wishfulhopenoaversives

Dr. Israel asks his audience to consider these questions, above in the slide. His input after reading the first question is “I don’t think it is.” However, again he does not offer research based evidence of this, strictly opinion. Question Number 2 highlights Dr. Israel’s opinion of professionals in the field with statements of, “current fascination” and “wishful hope.” Individuals in the field of ABA utilize functional assessment to determine the most effective treatment for their clients, with hope for better outcomes for their futures, not to avoid the use of aversives.

The JRC does not utilize best practices in the use of punishment/consequences. Punisher assessments are not conducted, a limited choice of aversives is utilized at the facility. In the field of ABA punisher assessments are conducted to determine what punisher provides a desire to avoid the consequence without an increase in target or other maladaptive behaviors. Punishment is a very personal event because what decreases behavior for one person, may not for another. Simply removing an earned token for some individuals can not only be punishment, but may increase aggressive behaviors; therefore this would not be the chosen intervention. The JRC does not individualize the punishers chosen for its residence beyond number of GED devices placed on an individual or strength of the shock.

Best practices would tell us that a behavior should receive the consequence immediately following the behavior. Lerman and Vordran state, “Current knowledge indicates that the mild punishers typically used in clinical settings will be ineffective unless the consequence immediately follows problem behavior…. teachers and caregivers should be concerned with selecting punishers that can be

readily delivered as soon as the behavior occurs (page 445).” By design the JRC is not able to implement the consequence to a behavior within a short amount of time. The JRC describes the procedures that cause the delay and shows a brief clip of this on their website. Please look at: www.judgerc.org click on contents, click on Optional Intensive Treatment, click on films, scroll down (3)(g) to title – Explanation of the GED by Dr. von Heyn. Dr. Heyn describes the process, “If the staff in the room see a behavior that they think is targeted for a GED, what they need to do is pick up the recording sheet, and it will say John Doe on top. They need to go to another staff member to say, “John Doe just punched his head, the consequence says GED,” so they need to confirm the existence of the behavior with another staff member and the consequence. They then would pick up the remote transmitter (inside of a plexiglass case)…make sure the case says, John Doe on the front, so they’re not picking up somebody else’s. It produces a slight delay between the behavior and the treatment. The staff are trained to go through this procedure to make sure there are no accidents. Pick up the device, press the button and say, “John, there’s no punching your head.” 10:10 seconds into the video is a young lady engaging in hand flapping behavior. You will see that she stops the behavior, and that the shock will be implemented after she has stopped and is appropriately engaging with a puzzle. Due to the delay in receiving the shock, she is actually punished for appropriate behaviors. (This video has since been removed from the website.)

On the day of my visit, one young man engaged in several maladaptive behaviors and did not receive the shock that was called for in his behavior program or other assigned consequences because no one was there to witness it, as he is in a 5:1 or greater client to staff ratio. When I observed I saw staff talking among themselves rather than observing the individuals and delivering the consequences as described in each person’s behavior plan. This inconsistent application of the consequence can maintain maladaptive behavior because people are successful in demonstrating the behavior when no one catches it. Therefore they sometimes can engage in dis-allowed behaviors without consequence. When this occurs, this can result in maintenance or increase of the behavior. If aversives are used they need to be used consistently.

The JRC does not utilize best practices in the use of reinforcement .

The JRC uses multiple level “contracts” with students, many of whom are unable to comprehend the complexity. These contracts are broken down into these areas: Less than a day (LTD), More than a day (MTD), Overnight (ON), Special (SPC), and Transport (TRA).

The behavior plans that I reviewed provide for an extremely thin schedule of reinforcement and required that the individuals have zero levels of behaviors for long periods of time in order to earn minimal reinforcement, i.e. flavored water.   There is nothing in the literature that would support the behavior intervention plans that I reviewed. Professionally accepted practice calls for reinforcers (like punishers) to be individualized (selected after an analysis of what the particular person finds punishing or reinforcing). It is unlikely that any single (or even several) reinforcers would be reinforcing to everyone. For this reason, a quality behavior program would begin with significant effort directed toward identifying the specific things a person finds rewarding. These could be as diverse as chocolate for one person, a break for another, or hand lotion for a third.

The JRC parades large contract stores and game room environments in their presentations to show an elaborate array of items that clients can either purchase or engage with (Please see pictures below).

BigRewardStore

The Big Reward Store for the developmentally disabled population. During my two day visit that included more than 6 hours of observation, only one student was seen using anything in the Big Reward Store. That student was using the ball pit.

teenlounge

This room provides more games and lounging. It is called the Teen Lounge. No clients were seen in this room during the 2 day visit.

contractstore2 contractstore3

contractstore1

The photos above are of the Contract Store. Quote from the website: “We named it the “Contract Store” because the students also have to be passing their weekly behavioral contracts in order to earn the privilege of using it.”

Students must not only earn points or money for completing their academic work, but they must also maintain “weekly behavioral contracts in order to earn the privilege of using it.”

Please note the contents of the “Contract Store.” This store has a considerable number of items available that would generally be of interest to girls or women – lots of jewelry, clothing, pocketbooks, wigs, etc. The population at the JRC is more than 70% male. When I questioned a Case Manager regarding this, she indicated that some of the students like to buy things and send them home to their parents. The implication was that students who worked hard on their academics and met their “weekly behavioral contracts,” want to purchase items for their parents. I find this hard to believe. If this is true, I find this is a way to keep parents attracted to this facility. Imagine receiving a gift from your child who you felt the need to place in an environment such as the JRC.

Reinforcement on a more immediate basis, i.e. immediately following positive behaviors, as would be professionally accepted, was not witnessed on any occasion during the 2 day visit. All reinforcement is earned over time, sometimes over a significant length of time. In the same way that delayed punishment is ineffective in reducing maladaptive behaviors, delayed reinforcement is inappropriate, especially for individuals who have cognitive disabilities because they are unable to relate the reward to the desired behavior.

The JRC calls access to the Big Reward Store, the Teen Lounge and the Contract Store ‘rewards’, because they cannot call them reinforcement. Reinforcement by definition must have a direct correlation to the behavior that occurs before it and it must increase the behavior we wish to teach an individual or have an individual demonstrate with more frequency.

The JRC does not teach new or replacement skills including ways to communicate needs/wants.

Another important behavioral practice is teaching new or replacement skills. This practice must begin with a functional assessment. A functional assessment determines the purpose of the behavior, and then provides the clinician with information to determine an intervention or treatment plan. Functional Communication Training (FCT) is a crucial part of any intervention plan. The Lambert, et al study showed, “All trial-based FAs resulted in identification of behavioral functions, and subsequent FCT led to reductions in problem behavior and increases in communication (Pg. 579).

During my time at the JRC I did not witness any teaching of new skills, or replacement skills. If we do not want individuals to engage in maladaptive or inappropriate behaviors we must teach the alternatives. One client’s program applied the GED for standing up without permission. We were informed that they were trying to teach him sign language, although they all recognize that he is unable to manipulate his fingers because they are short and stiff, and no teaching of sign language was observed. Instead of requiring a skill much too difficult for the client, they could have provided him with a bell or other auditory device he could access when he desired to stand up, so that staff would be notified and able to supervise. Instead at the JRC they simply expect the individual to figure out what he is allowed or not allowed to do based on when he/she gets shocked. They provide little by way of instruction to help individuals with disabilities learn the desired response or replace maladaptive behaviors (for example, turning over a work table) with adaptive ones (using a sign language gesture to request a break from the task).

Additional reinforcement concerns include the use of dispensers to deliver reinforcement to individuals who utilize the computer programs as part of their education at the JRC. Gumball like dispensers (see photo below) are connected to computers and deliver reinforcement at a predetermined schedule based on positive responses from the client. This eliminates the need for staff to deliver reinforcement, and the need for staff to directly teach clients. The lack of human interaction between staff and clients not only creates a sterile environment; it does not teach the clients appropriate behaviors in social situations that would help them to succeed outside of this facility. In fact, staff are specifically prohibited from having any social interaction with the students. This is not only cruel, but it does not offer opportunities for students to learn appropriate social interaction.

The JRC writes vague goals and behavior intervention plans that are subjective to the reader – Behavior Intervention Plans should be written such that any individual reading them would be able to implement them. Target behaviors in the documents reviewed provide broad explanations, i.e. ‘Loud Noises above staff’. Each person reading this behavior definition can interpret it differently, therefore delivery of a punishment may not be consistent, and would lead to intermittent reinforcement, which is the strongest form of reinforcement to maintain a behavior.

The JRC punishes behaviors that are not deemed dangerous to the individual or others, under the premise that they are precursors to maladaptive behaviors. One of the men observed during this visit, according to his behavior intervention plan, receives a GED skin shock for standing up unassisted. It was explained that this may lead to his falling and getting hurt, but also that this may be a precursor to an aggression. Standing up is the precursor behavior to many other behaviors that all of us partake in each day. This highlights why a functional assessment would be necessary to conduct, identify appropriate precursor behaviors, teach alternatives and avoid implementing punishment procedures for everyday activities.

The JRC does not utilize best practices in the teaching of individuals with autism – The JRC explained that they pull students out to do “ABA” or discrete trials for those who have this written into their Individual Education Plan. They do not implement these strategies as a methodology, but instead as a pull-out much like speech or OT.

The JRC has developed its own computer programs with no curriculum in mind for those individuals who are more profoundly affected. Simple matching tasks are repeated over and over, with no human presenting the information and looking for why a student may be responding incorrectly. No alternative methods for teaching are provided. All grade level classrooms provide instruction in this model – all computers are set up along the peripheral of the room, and all students face the wall.

classyoung

(Please note those children wearing backpacks are strapped to the GED device.)

Clients requiring toilet training are taught in the bathroom, all day every day. All activities are conducted in the bathroom, teaching and EATING. Please see the pictures below of the bathroom area. On a document reviewed, the client’s classroom is listed as “Intensive Toileting Room.”

Bathroom3              Bathroom2Bathroom

The JRC’s treatment of individuals in their care is inhumane – not just because of the use of the GED, but because their practices almost ensure that the students will require the intervention longer than is necessary. They punish behaviors that are not a danger to self or others. This is not best practice in the field of Applied Behavior Analysis.

What is the alternative?

There are parent pleas in support of the JRC and I have to say I understand. I also must believe that these parents do not know of any alternatives and that they had been led down the wrong path for so long, that this was their only alternative.

I am this parent, the one who searched for answers, the one who thought that I would have to place my child in an institution, and the one who fell prey to the wrongdoings of so many professionals who recommended so many “treatments” in hopes that they would be the answer that my child needed.

I am the parent of three children, two with autism. My youngest child was the one we felt we would never find the answers for, and about whom so many professionals had made promises. For years we were unable to explain his self-injurious behaviors. His aggressive behaviors included biting, hitting, pinching, and scratching. His self-injurious behaviors, which exceeded 1,000 times a day, consisted of biting himself; his palms and fingers were split open from him biting them. He would cry for hours on the couch unable to be consoled, strip his clothing off and urinate and smear feces everywhere. He needed to be watched at all times, as he would gain access to dangerous substances, one time pouring citronella oil over his face leading to a phone call with poison control who let me know that this substance could cause blindness. He was a child that ran away regularly into dangerous streets and situations and who would climb to high heights that were unsafe.

In May 2002 when he was about to be 10 years old, he had been kicked out of his school placement and placed on home instruction due to not only his self-injurious behaviors, but also aggressive behaviors. The home instruction individuals only exacerbated the situation, and then left us without services. By August of 2002 I will say that I still loved my son, but I dreaded each day hearing his bedroom door opening and knowing that he was awake and my day was about to begin. Had you met me at that time you would have thought I was a battered woman because I was so frequently injured by my son.

We were blessed to have found Kennedy Krieger Institute (KKI) in Baltimore Maryland. In Nov 2002 we had an intake at KKI, and by Feb 2003 our son was admitted. 4 ½ months within this unit saved our son’s life and ensured his future was brighter. At KKI they conducted a Functional Analysis of the behaviors for 3 months, designed a behavior plan, implemented the plan, made modifications, trained my husband and myself, and trained staff in NJ to help transition him back home. June 26th was our 10 year anniversary of leaving KKI, and our son has remained home with us for that entire time. He learned more during the first 3 years after leaving his 4 ½ month stay at KKI than he had in all ten of his years prior. At the age of 21, he still lives home, all 5’10” and 185 lbs of him, he is a pleasure to be with, he goes with us wherever we go in our neighborhood and community, goes on vacation every year to Disney and there is no concern about his behaviors, because we still have a behavior intervention plan that is effective.

I am now a Board Certified Behavior Analyst . I went back to school after our experience at KKI, in order to help other families not end up the way that we did, taking the advice of those who only caused more damage. I now work with other families and individuals who have severely dangerous and disruptive behaviors so that they can get the help they need as our son did at KKI.

Are we free of aversives in our home? No. I am not someone who will tell you that the use of all aversive procedures must go. However, there are more effective aversives that can be delivered immediately and without pain. In our case we use an air horn that you find in a party supply store, if our son aggresses we push the air horn. While considered an aversive, it did not cause pain. We have not used it in three years. Our son and others with whom I have worked and who went to KKI are success stories and demonstrate how these types of severe behavioral problems should be addressed. All now live lives better than their families could ever have imagined.

Conclusion

I ask that you ensure best practices are utilized at any facility that makes promises to help individuals with autism and other disabilities. I beg you that you help those who have no voice to be heard. Documents that I received from the JRC are not reflective of what I saw during my stay there. All parties advocating for children must know that there are other alternative that are effective. Skinner was an advocate of reinforcement, and reinforcement is missing from the JRC, no matter what they claim.

I thank you for your consideration of this letter, and should you have any questions, please do not hesitate to contact me at brickposse@comcast.net. (My original letter had my phone number, I received no call.)

Anxiously waiting an answer,

Bobbie J. Gallagher, M.A., BCBA

Other pictures from JRC

Electrode2prong Electrode2 ElectrodeRemoteReceiverBatteryPackbackpackfannypack

References

Hanley, G.P., Iwata, B.A., and McCord, B.E., Functional Analysis of Program Behavior: A Review, Journal of Applied Behavior Analysis, 2003, 36, 147-185 (2)

Lambert, J.M., Bloom, S.E., and Irvin, J., (2012) Trial-based Functional Analysis and Functional Communication Training in an Early Childhood Setting., Journal of Applied Behavior Analysis, 45, 579-584

Lerman, Dorothea and Vordran, Christina, On The Status of Knowledge For Using Punishment: Implications For Treating Behavior Disorders, Journal of Applied Behavior Analysis, 2002, 35, 431-464

Linscheid, T.R., Iwata, B.A., Ricketts, R.W., Williams, D.E. and Griffin, J.C., Clinical Evaluation of the Self-Injurious Behavior Inhibiting System (SIBIS), Journal Of Applied Behavior Analysis, 1990, 23, 53-78.

Worsdell, A. S., Iwata, B. A., Hanley, G. P., Thompson, R. H., & Kahng, S. (2000). Effects of Continuous and Intermittent Reinforcement for Problem Behavior During Functional Communication Training. Journal of Applied Behavior Analysis, 33, 167-179.

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About abrickwall

mother of three children, two with autism and Board Certified Behavior Analyst helping families recieve appropriate services for their children
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