University of Northern Iowa will review involvement in 'facilitated communication' conference

Conference wraps as planned, despite criticism

(File photo) A driver drives through the gateway of the University of Northern Iowa on Thursday, June 23, 2011, in Cedar Falls, Iowa. (SourceMedia Group News/Jim Slosiarek)

Following widespread criticism of its involvement in a conference featuring the controversial practice of “facilitated communication” with disabled individuals, the University of Northern Iowa is convening a group of faculty experts to discuss practices featured at the event.

“We regularly evaluate UNI’s sponsorship of conferences and events to ensure that we are supporting high-quality programming consistent with the mission of the university,” UNI spokesman Scott Ketelsen said in a statement.

“As part of this regular review, we will be convening a group of faculty experts from across campus to discuss the practices presented at this conference.”

UNI hosted the Midwest Summer Institute on Monday and Tuesday despite calls for it to cancel the event and disavow “facilitated communication” — which is based on the idea facilitators can convey the thoughts of non-verbal individuals by supporting their hand over a keyboard or other communication device.

The method has come under fire from many in the academic and scientific community concerned it puts words in the mouths of the vulnerable and exposes them and their caregivers to abuse and false allegations.

A list of 30-plus academics and professors from across the country and globe in May sent a letter to UNI College of Education Dean Gaetane Jean-Marie asking her to drop support of the event promoting “this invalidated and demonstrably harmful practice.”

UNI did not respond to the letter initially, except to say it was received, according to one of its signatories, Jason Travers, an association professor in the Department of Education with the University of Kansas.

Although UNI administrators did not speak with The Gazette on the topic, Jean-Marie said in an email over the weekend said she, another administrator and the conference organizer met with UNI faculty to discuss the issue June 11. It’s unclear what came from that conversation.

UNI hosted the two-day conference this week as planned, along with co-sponsors Inclusion Connection, based in Waverly, and Syracuse University’s Institute on Communication and Inclusion, previously called the Facilitated Communication Institution.

More than 200 people registered to attend, according to Ketelsen.

As it was wrapping up Tuesday afternoon, Ketelsen issued a statement acknowledging concerns have been raised about practices presented at the event.

“The University of Northern Iowa does not condone any practices that are harmful to any individual. Our focus is on nurturing and supporting all individuals in the pursuit of a high-quality education,” according to the statement, which also went to the group that sent UNI the letter expressing concerns in May.

“As an institution of higher learning,” the letter continued, “we value the exploration and critique of ideas and practices through rigorous evaluation of multiple sources of evidence. We welcome and respect debate on practices that assure broad inclusion in serving and supporting vulnerable populations and individuals with disabilities.”

Supporters of the communication method believe it helps disabled individuals by, among other things, offering emotional support and stability and helping them slow down, enabling communication that previously seemed out of reach.

But critics, according to the letter condemning the UNI-based conference, said “overwhelming scientific evidence suggests that facilitated communication constitutes a serious violation of the individual, civil and human rights of people with disabilities, robbing them of the opportunity to communicate independently with available innovative technologies.”

Research published in peer-reviewed journals has discredited the technique, supporting statements from organizations such as the American Academy of Child and Adolescent Psychiatry and the American Academy of Pediatrics that disavowed it as “not a scientifically valid technique.”

The American Speech-Language Hearing Association recently came out with a draft position, calling facilitated communication “a discredited technique that should not be used.”

When asked about costs for the UNI-based event, Ketelsen said UNI “cannot verify the conference cost since we did not organize the event.”

He said all expenses incurred by UNI are reimbursed by the organizing group, Inclusion Connection, a not-for-profit focused on “promoting inclusive communities that live, learn, work and play together.”

Officials from that organization did not return calls from The Gazette.

A UNI strategic initiatives fund — which consists of non-general-education dollars administered by the UNI Foundation — did contribute $5,000 to the event, according to Ketelsen.

UNI is not collecting revenue from the event, which cost $250 to attend both days, with a $50 discount for early registration.

Louis Stepanek, 89, of Cedar Rapids, said he wrote to UNI administrators over the weekend asking them to halt their involvement in the institute — as he has experienced firsthand the devastation facilitated communication can cause.

He said a facilitator started working with his grown son, who was diagnosed with Down syndrome at birth, and soon after started accusing him and his wife of abusing their child, citing allegations emerged from facilitated communication.

The couple lost access to their child for a period of time, although no charges were ever brought against them and they eventually got him back.

“The system is totally fake, and the idea that UNI would even consider it ,” Stepanek said. “That is going to cast a real reflection on UNI. I always have thought greatly of UNI . It’s a great university.

“But to let people come in there and hold this conference, that’s a big mistake.”

l Comments: (319) 339-3158; vanessa.miller@thegazette.com

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