Monday, March 16, 2009

Requesting an AAC assessment

This is the stance that earned me the title militant mom: Communications with schools are court admissible evidence and IEPs are legal contracts. 

 I learned from experience that a potential audience for every communication with our school district is the Office of Procedural Safeguards at the California Department of Education. So while I do try to keep the letters civil and polite (why not?) I also make sure they let the district know I know my child's rights, and they have all the i's dotted and t's crossed.  Not that I want to go to court or file complaints, everyone loses when we do. But when the district knows that we know we can, and will, they are more likely to serve and we are far less likely to go. 

The squeaky wheel gets grease, and my district trained me to squeak. 

Below is a template I wrote, based on our letter requesting assessment for a couple of local families who find their child in the position ours was two years ago-- in a district that made conflicting claims: this child was not an AAC candidate, and the district is happy to keep experimenting with PECS and sign. 

An AAC user fits this profile: receptive language higher than expressive langauge + intent to communicate. News flash: non-verbal children who use PECS are AAC users. These children have a right to assistive technology under IDEA.

That is just about all kids with autism. They should be assessed by a qualified provider. 

Districts are not so excited about this. Why? PECs and sign are practically free (especially compared to dynamic speech devices) and about the only thing most speech therapists know and are trained in (getting a device and a full AAC system requires an AAC specialist, another expensive service). 

 We need to build knowledge of and demand for these services. They make all the difference. Our daughter went from her preschool goals and curriculum to second grade curriculum in a few months, once she had a device and support to use it. Here is the template:


[Your address here]

District Contact (principal, program specialist, etc)
District address

Child’s full name
Date of birth
School of attendance and grade level


Dear [insert district contact name here]

Under the Disabilities in Education Act of 2004, my child has a right to devices and services which allow her to access the educational curriculum in the Least Restrictive Environment (20 U.S.C. §1401(a)(25,26); 34 C.F.R. §300.308) (34 C.F.R. §300.308). This includes Augmentative and Alternative Communication (AAC) devices and services.

Our daughter has a diagnosis of Rett Syndrome, which causes severe apraxia. She therefore has effectively no use of her hands and is non-verbal. The prognosis is that she will not recover speech or hand functions with therapies.

Because our daughter uses {insert examples of her communication here, such as , proxemics/going to the thing she wants, sign, picture ions, gestures/pointing, reaching; utterances) to communicate we know that she has higher receptive than expressive language. She is by definition an AAC (American Speech Langauge-Hearing Association).

Because of her prognosis and the difference between her receptive and expressive abilities, her current systems limit access to her range of language and vocabulary. Further, her current systems require her to access communication with her hands, which is inappropriate to her diagnosis. Her current AAC systems are therefore inappropriate for her educational needs and inaccessible due to her diagnosis.

We request a medically based AAC assessment from a qualified outside provider.

We understand that you will send us an assessment plan that describes who will provide the assessment and how it will be completed. We also are aware that you have sixty days to complete the assessment and look forward to hearing from you soon.


The parents of (insert your child’s full name here)

Sunday, March 15, 2009

Militant Moms

I was recently at a gathering of families of children with Rett Syndrome. My daughters' pediatrician introduced me as "our most militant mom, who managed to get an AAC program for her daughter." I laughed and then inwardly bristled. I've spent the weekend reflecting on that comment, offered I think, as a compliment.

I finally decided I felt saddened by this perception of militancy. First, I don't want to be unnecessarily aggressive, I am a teacher educator myself and value teachers and public schools. It is a noble enterprise that I value above measure. Public education is one of our most important civic institutions, along with the courts and the legislature. At least in my mind.
Not to mention that I am a boderline pacifist. At least a strongly committed diplomat. 


Militant? All I have done is used the legal tools that are my right to use as a citizen. I've used them not to extend my right to dump toxic chemicals into my local river, or protect myself from lawsuits related to dangerous products I made for children, but to ensure that my child's school complies with the law and appropriate education. If anyone wronged another in this case, if any one was doing harm, committing violence, it was not me or my child. So why am I considered militant? This image of me as the agressor was painful, especially coming from a friend and fellow advocate for children. 

When schools deny or attempt to obscure children's rights that are protected under the law,this drives parents to use the law to assert those rights. To label this fair use of the law, which often requires enormous resources that families do not have, as militant, connoting that parents are the ones with a vast army, a huge budget, organization and  dangerous tools is further obscuring the issues and once again, making children with disabilities and their families the antagonist in this drama. 

Parents should not further internalize the negative connotations that go with the term militant. We are the protagonists, the heros of the story. The David against the giant. 

Certainly not militant. Simply assertive, brave, courageous, committed to our children, loyal...