Monday, August 11, 2014

Guest Post: Communication is a Human Right

2014 Syracuse University Conference Schedule
MCPS Director of Special Education Gwen Mason and parents from the Montgomery County autism pilot program spoke at Syracuse University (Douglas Biklen, leading researcher of Facilitated Communication and at this university) at their annual conference in July.  This university conference is solely about facilitated communication (FC).   As FC is of such great controversy, the newer terminology to avoid this is supported typing.  However, Syracuse is firm about keeping the FC name.   The Montgomery County Autism Pilot project does not use the name of FC to avoid this controversy, but did however, go to a conference on Facilitated Communication and presented their program there as a mode.

By way of history---- there was a tremendous amount of controversy in setting up the Montgomery County class-- the autism program under Kris Secan did NOT support or agree with it at all, and the parents of the 5 children were the ones that pushed to get the program. Their efforts including due process at the hearing levels, IEP meetings, and due process where MCPS rejected and would not enter psychological results completed by other leading professionals in the field that used facilitated typing into the IEPs, and labeled the data as invalid.  MCPS Director Gwen Mason and others worked to make it happen- not the Autism program under Kris Secan. Indeed, Kris Secan's staff are not involved ( or minimally involved) in it. 

The controversy on FC, (now usually called supported typing) continues within MCPS and the autism professionals that work there.  Many even refused to go the trainings that were held by staff from Syracuse University in MCPS.

In addition, there are speech pathologists in MCPS who have been trained privately in Texas and Syracuse in the methodology and are NOT ALLOWED to use them in MCPS  (unless they are in the Pilot program of course) .  All of them I know practice privately and deliver the supports in their practices. 

The problem of equal access to the program and even the strategies/technology in it  is significant. My hunch is that maybe there is a perception that kids who should have supportive typing technology available to them are ONLY those who are perceived as being more "high functioning" or  worse, have had to prove that they are!   

This is outrageous,  because communication is a human right, regardless of how "low or high functioning" someone is , and to deprive somewhat of the right to communicate in a way that might work for them is unethical and immoral.  It would be like not giving a kid with intellectual disabilities eye glasses when he needs them because he is perceived as "not smart enough"   Seeing is a human right, so is communicating.   Access to medical treatments for diseases are not withheld based on intellectual ability,  and neither should educational strategies be either.

Furthermore,  depriving someone of the opportunity to even see (have access to) if supported typing (or other technology) might help them communicate better at their level is even more wrong.  No matter where you stand on the FC/facilitated typing debate, the bottom line is that access to any technology or strategy should be non-discriminatory.  And, to determine if a strategy or technology is effective, there has to be a time period where it is tried and taught and practiced first.  Right now, most children with autism and other disabilities can't make it to the point where they get this opportunity.  I love research and follow it obsessively, but aIso believe that what counts is what works for what child at what time in their lives!

Many parents had the resources and supports to access and pay for facilitated typing training and are truly ground breakers in sharing this with MCPS and convincing them to start the project, and they may indeed change the face of autism instruction in MCPS in the future.  I hope their efforts will extend to advocating for all other children with autism (and with other disabilities) in MCPS to have this access, and make sure that levels or perceived levels of "intellectual ability" should not be anywhere in the criteria to access such technology and teaching strategies.

But MOST parents do not/did not have access or resources to such methodologies, and thus it is close to impossible to prove their child might benefit from them-- as there is no way to get data without giving the access to start with.  If you do not have private financial resources to help you, MCPS currently can not be counted on to give "equal access" and the "burden of proof" is on these families.    

We absolutely must support each other's children as well as our own in this endeavor. 
Sorry for the length of this post--- But these families--- in and not in the project- and this issue are dear to my heart.

Montgomery County Advocate for students with special education needs.

1 comment:

  1. An understanding that verbal communication is not always the goal is so key. Students who communicate using FC should without question be supported in that by MCPS. Thank you for your work for these students and I hope that this pilot program not only has success, but SPREADS.


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