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Rom Houben’s Care Home Bans Facilitated Communication

March 2, 2010

Dismissed for half a lifetime as being in a vegetative state, Rom Houben seemed to be able to communicate for the first time in 23 years. An assistant sensed tiny movements in his finger and helped him to tap out sentences on a computer.

His poignant observations and lack of bitterness at spending so long “locked in” to a completely paralysed body touched many when his case first came to light and caused an international sensation. He was said to be writing a book, echoing the 1997 autobiography of the French journalist Jean-Dominique Bauby, which was made into the film The Diving Bell and the Butterfly.

However, today his care home has banned the controversial technique of “facilitated communication” (FC) and Mr Houben’s thoughts are once again considered beyond reach.

The 46-year-old’s brief period of lucidity was a fantasy, his doctors declared after carrying out further tests. The issue has led to bitter recriminations between medics, carers and relatives who are refusing to abandon the approach that had apparently brought Mr Houben back to life. As well as raising painful questions about the true state of his consciousness, the case has implications for hundreds of other brain-injury patients suspected by their families of retaining full awareness while lacking the physical means to communicate.

“I shall never forget the day when they discovered what was truly wrong with me,” Mr Houben’s computer proclaimed last year, thanks to help from his facilitator.

“It was my second birth. I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.”

Mr Houben was just 20, and a martial arts enthusiast, when he narrowly survived a car crash in 1983.

His mother and sister refused to accept that he had been left permanently unconscious and their persistence paid off when Professor Steven Laureys, the head of the coma science group at Liège University Hospital, in Belgium, discovered four years ago that Mr Houben’s brain scan was nearly normal.

A speech therapist said that she detected tiny movements in his hand and one of his carers, Linda Wouters, became adept at helping him to express himself.

The FC method involved an assistant holding Mr Houben’s hand poised over a computer screen and pressing his right forefinger against letters of the alphabet.

“When he moves, you can hardly see it but I can feel it,” Ms Wouters told The Times in November.

“The tension increases and I feel he wants to go, so I move his hand along the screen and if it is a mistake he pulls back. As a facilitator, you have to be very careful that you do not take over. You have to follow him.”

Doubts began to be voiced as soon as television pictures showed Mr Houben and Ms Wouters typing furiously while she supported his right hand. The words flowed even when Mr Houben seemed to have his eyes closed or averted from the screen.

“It seems impossible that someone with his level of paralysis, and years of inactivity, would be able to type so quickly with just a little support,” said Steven Novella, an academic clinical neurologist at Yale University School of Medicine.

“There is little doubt, in other words, that his typing is the product of bogus facilitated communication — the facilitator is doing the communicating, not Houben.”

Arthur Caplan, Professor of Bioethics at the University of Pennsylvania, said: “It is Ouija board stuff. It’s been discredited time and again when people look at it.”

The outcry led Professor Laureys to propose a simple scientific test. Three paralysed patients were shown objects or told words while their facilitator was out of the room, and then asked to describe them with the help of their carer. This was repeated 15 times. Mr Houben did not give any correct responses.

“There were people who were convinced that it comes from the patient but it does not,” Professor Laureys said.He repeated tests on Mr Houben’s consciousness, asking him to imagine playing sport for “yes”, or reading a map for “no”, utilising different parts of the brain that can be seen on a scan. He passed the test. “There is no doubt about his consciousness, which is why this is so painful,” said Professor Laureys. “Yes he is conscious — but you just cannot communicate with him.”

Mr Houben’s case does not now seem comparable with that of Mr Bauby, who was able to write The Diving Bell and the Butterfly by blinking his left eyelid as the alphabet was recited. It is now unclear if Mr Houben has any provable, controllable, physical movements despite claims that he can indicate “yes” or “no” with his foot.

Relatives of all paralysed brain injury patients face huge questions about whether their loved one is still conscious, feeling pain, or even ready to die — a loaded question in Belgium, where euthanasia is legal. Mr Houben’s case was taken up by anti-euthanasia campaigners as proof that hope should never be abandoned.

Mr Houben’s family have not given up. His sister, Tereïna, 53, has vowed to continue using FC as well as trying to find other ways of interacting with her brother.

“I am doing it, my mother is doing it, altogether six people who know Rom are doing it and we get information about how he is feeling,” she said.

“We know that sometimes people with brain injuries sometimes lose the communication between words and images, or words and function. We also know that Rom has a big problem with his memory, so sometimes you can speak normally and sometimes you cannot speak at all with Rom. It depends also on the medication.

“We cannot prove it, but there are many things we cannot prove, like osteopathy and acupuncture.”

When FC was first pioneered with autistic children in the 1970s, it seemed like a powerful new technique. Children thought to be too brain-damaged to communicate were believed to have almost intact intellects. However, blind trials showed that it was the facilitator, not the client, who was communicating.

Dr Novella said: “FC is nothing but a well-meaning delusion. But it is also a dangerous one — FC testimony has led to the false conviction of adults accused of abuse.”

Not every expert dismisses the technique, however. Anne Emerson, of the Nottingham Trent University psychology department, said that although evidence was anecdotal, families around the world reported “increased levels of wellbeing, reduction in challenging behaviour, increases in independent skills, and increases in other forms of communication — including speech and the development of independent typing — in those who use FC.”

Ms Wouters angrily defended herself in an interview with the regional newspaper, Het Belang von Limburg: “Laureys paints me as a charlatan but I know Rom really can talk. I have nothing to hide. The world must know that Rom really can communicate. I am not a fraud.”

Managers of the care home in Zolder, eastern Belgium, where she works ordered FC to be stopped last week.They said: “We will find other communication methods with Rom but it needs time. We have to start again.”

I am very sad to read this article. I have no doubt that Rom Houben and his family are feeling much, much worse at having their only method of communication with each other taken away from them so unfairly.

Anne Emerson just happens to be a good friend of mine. She has helped many people to communicate using FC. Personally, I think the system is a great invention for those who very often can’t express themselves any other way, and, knowing several very intelligent severely disabled people, I sincerely believe that those who use FC communicate their own thoughts and choices, and not those of their facilitators.

As always, your comments are very welcome.

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3 Comments leave one →
  1. Arthur Golden permalink
    March 3, 2010 1:39 pm

    “…a simple scientific test. Three paralysed patients were shown objects or told words while their facilitator was out of the room, and then asked to describe them with the help of their carer. This was repeated 15 times. Mr Houben did not give any correct responses.”

    But was this “a simple scientific test” of Facilitated Communication? Or was it a test of his brain injury described by his sister as:

    “We know that sometimes people with brain injuries sometimes lose the communication between words and images, or words and function. We also know that Rom has a big problem with his memory…”

    It should be noted that one of the three paralyzed patients did pass this test and validated his Facilited Communication.

    Nearly 16 years ago my own son Ben, then age 22 and with severe autism living in his birthplace of Boston, was given this same “simple scientific test” by its apprarent developer speech pathologist Howard Shane PhD of Boston’s Children’s Medical Center and this test was claimed to invalidate his use of Facilitated Communication. Although completely nonverbal, Ben had some independent means of communication, which was not tested as a possible control.

    I now wonder if this simple scientific test was really testing my son’s brain dysfuntion caused by his severe autism. I am thinking of trying to validate this “simple scientific test” with my own son, using his independent means of communication. I am not so “scientific” so I plan to consult with leading scientists involved with Facilitated Communication. By the way, Ben lives at home with us his parents in Jerusalem Israel and continues to use Facilitated Communication for his very sophisticated communication. He uses his independent means of communication for more mundane matters. It is such a shame that Rom’s Care Home has banned the use of Facilitated Communication, as did almost all such facilities in the U.S. in the early 1990s based on this simple scientific test, apparently developed as part of adversarial court proceedings of sexual abuse, and not as part of pure scientific research seeking the truth.

    Arthur Golden

  2. summer permalink
    February 23, 2011 12:09 am

    “We know that sometimes people with brain injuries sometimes lose the communication between words and images, or words and function. We also know that Rom has a big problem with his memory…”

    If that’s why the test failed, then how come the correct answers were typed out every time the facilitator was present for the questions, and the wrong answers were given every time the facilitator was not present?

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