Support The Wall – Le Mur

A project of Autism Rights Watch against censorship in France

Couple days ago, we released the translation of an article on a civil lawsuit against an ABA center and Dr. Vinca Rivière in Lille, France, published early july in the web newspaper Mediapart. Some of you have asked for the translation of the first article on the story, published by Mediapart in April. We did it and we would like to thank Karen for her translation efforts. This article is highly critical of the methods of the Camus Center and attempts to depict ABA under a very negative light. Unfortunately, this lawsuit may hurt the growth of evidences based therapies in France.

“03 April 2012 | By Sophie

This complaint is embarrassing  Just under 10 months ago, Fernando Ramos, a father of two children with ASD, sent a letter to the Regional Health Authority (ARS) for the North-Pas-de-Calais region in order to, as he puts it “open the eyes of the powers that be to the methods used by the Camus center in Villeneuve d’Ascq.” According to him, certain practices used there are tantamount to “abuse”. The letter received on 07 July 2011 by the director of the ARS was followed by a visit from four members of the inspection team (IGR) which took place from August 25 to September 9 of the same year.  They submitted their report on February 29, 2012. As Mediapart can reveal today, it concludes that there are “malfunctions” in the center which constitute “risk factors of abuse likely to have repercussions on the children at the center”…

It’s embarrassing because the Camus center is not simply a structure for children with “severe behavioral difficulties”. It is the main foothold in France for the treatment of children with autism using the behavioral method known as ABA – Applied Behavior Analysis. This center, which opened in 2008, became widely-known to the French public in the fall of the same year, when the actor Francis Perrin was given an open platform on French TV’s “Envoyé Special” to present the method and the professionals treating his son Louis, “a child almost like any other”.

In addition, this year, 2012 autism has been declared the “National Cause” and the National Health Authority, in its report published in March, classified ABA as a “recommended intervention” http://www.has-sante.fr/portail/jcms/c_1224096/autisme-la-has-et-lanesm-recommandent-un-projet-personnalise-dinterventions-pour-chaque-enfant in the treatment of those with pervasive development disorders , the media very often turn to this center to illustrate the use of educational or behavioral therapies in children, as did “Sciences et avenir” magazine in its April 2012 issue. (http://www.sciencesetavenir.fr/sante/20120329.OBS4941/autisme-un-scandale-francais.html ).

The Camus center was created by Vinca Rivière, a lecturer at the University of Lille 3, who claims to have introduced this behavioral method to France.  Coming from the association Pas-à-Pas (Step-by-Step) which manages the center, and of which Vinca Rivière is the treasurer, this center has strong support from Xavier Bertrand, the minister for labor, employment and health, as shown by a letter of June 2011 (http://www.mediapart.fr/files/lettre_XB_Bequet.PDF )
Finally there are currently 20 children in the Camus center, which at the end of May or beginning of June 2012, the authorization to continue its activities with experimental establishment status under which it currently operates.

It is in this context that the parent’s complaint was lodged.

5 000 Euros for training

Fernando Ramos has two daughters: one born in May 2003 and the other in May 2004. From 2006, in Auvergne where he lives, this ordinary worker paid for ABA education by two psychologists sent from the Pas-à-Pas association. Education which cost him some 5,000 Euros (just over US $6000) to which was added around 600 Euros (US $740) a month for supervision, not counting travel and subsistence expenses. In 2007, on learning that the association was going to create the Camus center, this divorced father moved to the North of France, in “the hope of this therapy, which promised remission and access to a normal life for my daughters and the entire family.”
At the beginning, the younger daughter was happy to go to the center and to school, to such a point that her school time was increased to give her more “social interaction”. But 20 months later, it all went downhill. The father noticed “a regression” in his youngest daughter: “She didn’t want to go to the center anymore; she had a massive breakout of eczema; she became incontinent, soiling herself up to 10 times a day…” From being calm and kind in the videos of her arrival at the center, she became aggressive: “She threw things during the sessions, and she also started to hit the therapists” he says. At the end of 2010 and beginning of 2011, the father alerted the center’s management, as he judged there was a problem with the therapy.
In his letter he wrote: “During a visit in April, my daughters’ mother left in tears when she saw the psychologist sitting on Alicia for 45minutes in the toilets to stop her moving.” To stop the child from throwing objects, a technique known as “blockage” was used which consists of holding her arms tightly against her body: “Each evening I collected my daughter with bruises on her arms and wrists”, he continued in his complaint.

He also added that for two months his daughter had been regularly placed in the corner of a room fitted with a mattress so that she could not hurt herself and also in total darkness, a procedure known as “time out”.
Fernando Ramos does not dispute these punishments. They are, he says “part of the method”, even if “the child should be put in a situation of defeat as rarely as possible”.
ABA consists of a program of techniques to modify behavior and develop skills. All “correct responses are positively reinforced, that is immediately followed by something pleasurable for the child (a toy, a “well done” …)”. On the other hand though, inappropriate behaviors “are explicitly not reinforced and we proceed to extinction: the inappropriate behavior is systematically ignored. It will gradually disappear by itself because it is never reinforced, neither socially nor in any other fashion” as the website describing the method explains.
Vinca Rivière doesn’t dispute this either. Interviewed in the Villeneuve d’Ascq center on March 27, she explained that “time out is a punishment procedure” before immediately correcting herself clarifying that “quite literally, it’s a ‘calming down’ “. For example: If a child has behavioral challenges linked to sensory stimulations, light for example, we will take action so that these stimuli do not reach them. So we will reduce the light levels.” In practice? She explains that as there is no specially-dedicated room, “we cover the window”. “There are centers that put a hat on the child’s head to block out the light”, even a balaclava in some cases she explains.

“Punishment by electric shock”

To better understand the ABA method, she gives another example: “In behavioral analysis, there is punishment by electric shock procedures. Everyone finds that scandalous, but it is accepted by the Dutch government in certain procedures as a last resort for severe cases. What is called “electric shock” is introduced in training by making someone suck a 9 volt battery: it prickles the tongue. But that is sufficient to change a behavior, I saw it in Holland, and its effectiveness has been proven since the 50′s. The person with inappropriate behavior (in this case, she explained, a woman who hit her chin violently) is fitted with a belt, linked to an emitter placed on her thigh. As soon as she shows this behavior, an educator is able to activate the device using a remote control.  This does in fact produce a shock. But the important thing is that this woman, who could no longer do anything, reduced this behavior and was able to do other things. We have the cases of adults who have become more independent with that. This punishment is effective if the behavior diminishes quickly, otherwise it’s not a good punishment. If the behavior doesn’t lessen, we stop; we’re not going to increase it to 80 volts!  But in France, as soon as it’s mentioned, people immediately think of the film “One Flew Over the Cuckoo’s Nest” by Milos Forman.

The regional health inspectors from Nord-Pas-de-Calais were not given this type of explanation.  They simply examined the facts in the complaint lodged by Fernando Ramos. All the same, their inquiries with the staff confirmed that “the bruises (noticed on the little girl’s arms) did come from the blockages done by the educator” and that time-out’s, even though described as “extreme”, had effectively been implemented.

They also noted that the father had not signed the program entitled “reducing unsuitable behaviors” and that nothing in the meeting minutes specified the conditions under which a time out was carried out. Finally, they noted that the practice had continued, even after the father, who told us he learned of it from an educator, had asked for it to be stopped. “All of these breaches constitute risk factors for abuse” concluded the inspectors.

When we mentioned a complaint from a parent, Vinca Rivière swept aside the accusations: “Angry parents, unfortunately, are a regular occurrence, I can tell you… We see their pain. But when it’s said that we have a 50% success rate, we repeat that there is no 100%. Add to that, social problems, parents who divorce… That also has consequences, but how can we help? We don’t have the means. But our team members are supervised at all times, they know how to use punishment.”

Supervision and training that’s also where it hits hardest.

Working in a vacuum

During a meeting of staff representatives in April 2011, educators and therapists raised “their impression of being left to get on with it” and “the entire staff noted that there was a lack of supervision”.

According to the inspection’s conclusions, the educators and newly-hired team members received two days of theoretical training” then three days of observation, followed by two days training three or four weeks later.  On paper. Because in reality, this second training, “had not been set up”.

Moreover, certain parents complained in the Social Life Committee, that the high staff turnover rate disrupted the therapy. In fact, since the center was opened, almost half of the staff directly involved in the therapy with the children had resigned and that “absences due to sickness are a daily occurrence” according to the inspectors who looked at the records for 2010 and 2011. Vinca Rivière’s response: “in experimental structures, turnover is always high. Because the demands are not the same as in other structures. (…) Here, to ensure supervision, we ask that each person films themself. Each child has a video recorder with them and the educators must film themselves to evaluate their work and its effectiveness on the child. Of course, when you introduce a camera, it’s strange at first, but it’s to check that procedures are used properly.”

Parents also complained that they were not informed that students would be working with their children. Fernando Ramos counted 17 different people working with his daughter over the space of one year. “That’s what was in the scheduling, but you couldn’t count on them, she had many more than that, he wrote in his complaint. Not counting the trainees who came, without the parent’ agreement to carry out experiments on the children without being checked by the center’s management. The parents never got the results of all of that, our children were being used as guinea pigs.”

As it offers each child at least 30 hours a week the constant presence of “one, two, three, even four adults in very difficult cases”, this center naturally needs a lot of staff. So throughout the academic year, trainees in the Masters 2 in “Psychology, with specialization in experimental applied behavior analysis” from the University of Lille 3 “carry out missions with the children and tasks which should be done by a psychologist”, noted the inspectors.

Because the center has extremely close links with Lille 3: in this university, Vinca Rivière is responsible for the masters degree in “Experimental and applied behavioral analysis” on one hand and the University Diploma (DU) in “Behavioral Analysis applied to behavioral and developmental disorders”. On April 6th she hopes to obtain the creation of a professional degree from the University’s administration committee. “The minister for Higher Education requested it” she explains, admitting that “it’s not the normal way” to obtain the creation of a professional degree, and that the minister, if they can quite reasonably suggest the creation of a diploma, had in this case bypassed the reserves of the local universities.

At the time of the ARS inspection, all the psychologists working in the Camus center held the Masters 2, and had carried out their internships in the Pas-à-Pas association, notably in the Camus center. This is the case for the Assistant Director, Olivier Cartigny, Vinca Rivière’s stepson, appointed in January 2010 after having worked at the Camus center during his studies.

In addition, the majority of credits for training educators and team members at the center are used for inscription to the University diploma. Finally, as far as supervision of the professionals at the Camus center is concerned, it is carried out by the university of Lille 3, in the person of the treasurer of the Pas-à-Pas association, Vinca Rivière. In a nutshell then, a system operating in a vacuum, leading the inspectors to say  that “the professionals have no external recourse to express difficulties met in the course of their work” and that it is necessary to organize external supervision, so that everyone is able to express themselves freely “outside the hierarchical framework”.

80 000 Euros per child, per year

But openness is not this structure’s strong point. Here there is no inter-disciplinary treatment for the children, contrary to the National Authority for Health’s recommendations. No partnership with external structures either, although as they were reminded during a first meeting with the ARS in 2011, the law obliges experimental structures to sign agreements with other health professionals.

Faced with demands from parents wanting to include physical therapists, speech and occupational therapists as well as French and Math teachers in their child’s program, Vinca Rivière has only one answer “Here it’s ABA and ABA only.”  Never mind if the National Authority for Health recommends that parents are “vigilant regarding any methods requiring exclusivity in the treatment.”

At the end of March 2012 at Villenave d’Ascq, she explained: There are parents who want that, that and that, but it’s impossible. It’s not in the scientific protocol and it could have consequences on the treatment program. We won’t bring professionals with no knowledge of behavioral analysis into the center. If she accepts that, abroad, centers include speech therapists for example, she explains that “in France we don’t take them, because they don’t have the same scientific approach as us.  We want speech therapists to share our training at the university. The base is our training.”

Looking at the organization chart, there is a medical doctor at the Camus Center: Vinca Rivière who consults for three hours a week and ensures that “all vaccines are up to date”, that the child sleeps well, is growing well…, “a physical monitoring just as we would do for any child”.

However, the center, whose premises are given rent-free by the town of Villenave d’Ascq is financially extremely well-off. Here the budget allocated by the Minister for Health is more than 80,000 Euros per child per year. In comparison, not far away, an ITEP (Therapeutic, Educational and Pedagogical Institute) with 35 children, the majority of whom are autistic, has to function with some 45,000 Euros per child per year.

“Our price is the price of effectiveness” replies Vinca Rivière, who assures us that with her  method, 50 % of children who start therapy before the age of 4 have no more need of it after 2 or 3 years”. Last year at the Villenave d’Ascq center, there were only four children in the 3-6 year-old group and none at all in the 0-3 year-old group. In addition, thanks to a derogation from the usual procedure, admission is based on a dossier selected by the center itself, the Departmental authorities for people with disabilities having no say in the matter. Finally “the major concern in being able to see the effectiveness” according to Vinca Rivière, is that you need to understand “the techniques for observing behavioral treatment”. In other words, in her eyes, only professionals trained in her method are qualified to judge the results.

Unlucky for Fernando Ramos’ daughter. She was 21 months old when she first met the psychologists from the Pas-à-Pas association. Today, her father says “she is at a dead end”: back living in the Auvergne, he never found out what became of his letter. Neither has he found a structure suitable for his daughter. So he alone takes care of her learning and of modifying her behaviors.

The regional health authority confirms that the Camus center’s authorization will be renewed.”

admin On July - 27 - 2012

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