Thursday, December 18, 2008

Assistive Technology- fight for promise

I thought it might be useful for folks to post the story of our fight for our child's right to speak. A three year legal battle with our school district that almost cost us our home, but finally resolved with her having a device, a qualified support provider and an appropriate placement. 

First a little history and some definitions.

Assistive Technology is any tool or device that will help a person with a disability perform a task that is impacted by the disability. Assistive Technology (AT) can be very simple (braille, pencil grips, slant boards) to very complex (standers, motorized wheel chairs, voice activated computers or switches). A sub-specialty in AT is Augmentative and Assistive Communication (AAC). This branch of AT can include:
  •  "no tech" supports (like sign language, visual schedules and cards with Icons and words, some times called PECS- Picture Exchange Communication Systems) 
  •  "mid-tech" or "light tech" (single switch battery operated switches that can operate simple machines or communicate with pre-recorded messages) and
  •  "high tech" (dynamic speech generating devices that allow the user to select a wide range of vocabulary and create their own messages).
Since our daughter is aphasiac, we thought AAC was a natural option to explore. Would she be able to communicate with a device? She used everything else we gave her-- sign langauge, PECS, yes and no cards. It was clear she wanted to communicate. 

Unfortunately our school district fought us every step of the way. It is helpful to know what arguments do not work, legally. First they claimed she was too cognitively impaired to use AAC. 

AAC is appropriate for people with mental retardation (the legal term, not mine) including those with Down's Syndrome, Fragile X and other diagnoses. 

Then they claimed that she was not able to use a device because she was unable to access the switches with her hands. In trials, she was not able to demonstrate accuracy.

AAC devices now exist that allow users to use head pointers and eye gaze. Our daughter uses a My Tobii, which works solely on eye gaze. She also was able to use a Vantage by PRC which works by head pointing. (The Tobii is easier). 

Since having her device she has gone from answering simple yes and no questions as her main form of communication to writing poems, short journal entries, current events summaries and doing up to 20 math problems at a time. She is doing grade level work for the first time. She can use a screen with up to forty icons at a time and navigate between pages. 

To get this done, we had to file a compliance complaint with our state office of education. They found in our favor: our district refused to provide an assessment (the legal time limit under IDEA is 60 days, they waited 2.5 years by the time we filed) refused to hold an IEP about placement, refused to provide equipment listed in the IEP. These are all protected rights under IDEA. Finally they refused to comply with the corrective actions ordered by the state-- a staggering reaction-- and we got an attorney. 

It took a second mortgage on our house and a lot of beans and rice and oatmeal, but we prevailed. She has a device, a classroom, a qualified AAC specialist and so do five other students in our district. 

Our child was served, but I know of several families in our district who are fighting the same battle. 

Today I am posting new resources related to AAC and AT. These make the difference for many students between warehousing and education. It is worth the fight. It is their right.