Friday, December 19, 2008

IEP Goals. Audience, purposes and form

Much of what I have learned about writing IEPs is in response to problems created by not know how to go about this task. Writing IEP goals is a writing task, and it can be guided by the same kinds of questions writers ask: 
  • who is the audience?
  • what is the purpose?
  • what is the best form?
Who is the audience? That question seemed so obvious to me before we had to get ready to go to hearing. The IEP document, obviously, is written for the current IEP team, people who know your child. But it is also written for future IEP teams, who have not met your child yet. Potentially, it is also written for administrators who step in to help if problems arise, state monitors, courts, advocates, doctors and therapists. I used to accept goals that were written just for our team, assuming that everyone shared the knowledge of my child that would make the goals clear. Now I know that they need to be written for people who will never meet my child. That means they need to be clear and complete in a way that someone who has never met your child or understands her diagnosis can understand. 

What is the purpose? The IEP is first and foremost a legal contract between the school and your child. It is binding, and it protects your child's rights to all the services, including the duration and manner delivered, in the IEP. The district is only required to implement services that are documented in the IEP. This means that it needs to be very thorough and error free. Small errors in the duration, frequency or types of services can lead to big problems. 

In addition to serving as a legal contract, the IEP serves as an historical record for new teams. It should ideally give a picture of the child's educational history and progress and give the team useful information about next steps to take with the child. 

What form should the IEP take? Typically districts will have their own forms for IEPs so this is taken care of for you. However, often the forms do not allow enough room for the purpose. We often attach additional pages for different sections. IEPs often have different organizations from district to district. All IEPs should contain current levels of functioning and goals. The current  level of functioning and goals should drive the entire IEP. They should describe not only what the child can do now, but also what issues there are to address in the current IEP and beyond-- and why the team is working on the goals in the IEP. 

A sample of our most current communication goals-- the best ones we have to date-- is below. Notice that the goal includes the assistive technology, provides a rationale for the equipment used, includes not just who (teacher, aide etc) but refers to the skill needed, and gives measurable outcomes (how many words, how many turns, and in what context). 

Augmentative and Assistive Communication Goals 2008

Overview: Due to severe apraxia associated with her diagnosis, ___ is non-verbal and not expected to regain speech functions. She has limited use of her hands and cannot use sign language, complete picture exchanges or reliably direct select with hand operated switches. ___ uses eye gaze to select icons. According to her most recent AAC report, ___ understands conversational speech according to her age. ____ is a multi-modal communicator, using proxemics, utterances, gestures and aided communication with no and low tech devices and will begin using an eye-gaze supported high tech device 9/08. (See IEP face sheet for equipment list). Her receptive langauge is much higher than her expressive language. She is able to participate in up to six turns of conversation with skilled partners about familiar topics. She has few aided communication opportunities particularly outside of school.

Academic language
Current level of functioning
___ academic vocabulary is limited compared to her conversational vocabulary and her receptive language. ___ needs exposure to rich and engaging academic academic content appropriate to her age and an eye gaze accessible speech generating device will allow her to access all of her vocabulary independently. 

Long term goal:
To further develop academic linguistic competence, ___ will develop a core of 100 words using eye gaze accessible aided communication systems, including her high tech device, to express her understanding of core math, science, art and language arts concepts with skilled communication partners. 

___ will use a core vocabulary of 50 words with a skilled communication partner to generate one word responses to prompts about grade level academic concepts, closing at least one circle of communication. 
___ will use a core vocabulary of 75 words with a skilled communication partner to generate one to three word responses to prompts about grade level academic concepts closing one to three circles of communication. 

Conversational lanaguage.

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.

Wednesday, December 17, 2008

I was going to post just once a day but this was far to exciting to pass by. The title is "Drug Trials in Autism."
Could it be possible that we really are on the brink of a reversal? To hope...

school boards' face the impossible

I attended our local school board meeting last night to hear the latest in heartbreaking discussions of what to cut from the budget. This has been a resounding theme in our district, and many others for several years. Of course, we live in California, a state which, with the 7th largest economy in the world has the worst budgeting process in the world as far as I can tell. Still with our schools in 47th out of 50th in funding, we are still trying hard to reach 51 (allowing Puerto Rico to pass us). 

And our courageous Republican minority is still holding the budget hostage (we have a super majority rule here, so that two thirds of the state legislature has to pass the budget) insisting that they will not, not, not raise taxes. It might, they insist, hurt the economy. 

And it is not just the Republican minority in the state legislature. Parcel taxes in our district have failed the last three times we attempted to campaign. People were buying new SUVs and Wii's and wide screen digital TVs and voting down parcel taxes. I guess all that spending was good for the economies of the companies manufacturing these goods-- like Sony, Toyota and GMC. At least American car companies benefitted from all our spending right? And it provided good jobs, with full minimum wage jobs and no benefits or security for retail workers at good retail outlets. 

But I am confused. 

Our govenor lowered taxes, as promised in his campaign to recall the previous govenor, and the economy does not really seem to have gotten better in the last couple years...

Hmmm. So i want to try and think this through. Cut the budget further and what are the results? More people lose their jobs and can't make their mortgages. More homes go into foreclosure. More banks struggle. There are no jobs right now, so more people need general assistance, medicaid and food stamps, (which are also being cut, in order I guess to stimulate the economy) Shelters and food banks are already overwhelmed so I guess those newly homeless people will just have to live under the bridges, which actually are kind of crowded right now...

so how does all this budget cutting help,  exactly?  Any one?

We have already had, for years, kids going around the neighborhood, standing in lines at the grocery store and at the transit stations begging for donations or selling candy and gum to support music, art, sports, and yes, inconceivably even science programs for school. Every time I see them, I am ashamed. I am ashamed of my community, my state and my country. We should be taking care of this, not them. Why are our children forced to walk the streets begging for money for their schools? That seems fiscally irresponsible. Or some kind of irresponsible. 

I am proud to pay my taxes. I would pay more. The amount of money we pay in property taxes would not even cover tuition for one of my children in private school, much less three. And that tax money is supposed to cover a lot of other things, like 911 services, road building, medical and dental insurance for children...

In the Monty Python lampoon the The Life of Brian, they lampooned the anti-government stance. "What have the Romans ever done for us?" asks one of the revolutionaries of Judea. The others chime in, "Well, aqueducts." The first guy pauses, and says, "Well, besides aqueducts!?" After some arguing back and forth the list comes to include most of civilization: aqueducts, schools, sewers, health care, roads, trade... and so on. And after the long list, the first guy finally says, "Yeah, but besides all that?"

So besides dams and aqueducts, navigable harbors and water ways, vector control, health care for children, the elderly and disabled, k-12 schools community colleges and universities, roads, bridges, street lights, public utilities management, pollution regulation, public safety, fire fighters, ambulances, trauma centers, parks and recreation services, water treatment and sewage, farmers markets, street sweeping... what the heck are we getting for our tax dollars? Yeah, but besides that...

I am proud to pay my taxes and do my bit. I wish to never see another homeless family, another homeless veteran, another mentally ill person soiled and sitting in a doorway, another child with bad teeth or another student begging for money for her school. It would be worth not getting my kids an X-Box for that. Maybe they would even get some exercise and read without one. I wonder what others would give up.  And get. If we did. 

Fund the schools. Some day this generation of kids will grow up. And I don't think they will forget what we did when it was our turn to be responsible for them.


Tuesday, December 16, 2008

Reform what?

With President Elect Obama nominating Mr. Duncan to become the new secretary of education, everyone seems to be talking about reform. I would like to know more about what reforms he thinks are needed, because in education there are reform movements that seek to reform the previous reform movement. Ask any teacher. They will tell you that the trend in education is reform-- always reform. And the pendulum never slows, it simply gathers energy and swings wildly from one side of the pendulum to the other. Duncan has never been a teacher, so as a reformer it may be hard for him to get a sense of how hard this swing is for teachers to manage. 
Working as a teacher and teacher educator for many years, I have learned that it takes time for teachers to learn-- not surprising. They are after all, human like the rest of us and need time to practice complex things in varying conditions. I have seen reforms come in under one principal, with enormous amounts of effort and money following, only to be swept away after a year or two by a new administrator, new board, new idea. And the reform that had just begun to flourish is buried under some contrary idea. 
What I would say to Mr. Duncan and Mr. Obama is this: be smarter than the previous guys who did this. Don't throw out the baby with the bath water. Look not only at what has not worked, but what is working. Scale up what is working. Keep listening to all sides, get the big perspective. Use the really great work that the Institute for Educational Sciences (IES) has done to research what works. 
The biggest problem with No Child Left Behind is that it has turned our schools into dreary places where "reformers" come in and make sure every teacher is "covering material" at the same time, lockstep, documenting those who are not on the pacing guide-- even when they slow down to make sure their students are learning. Many teachers have left schools because, as one told me, I was being asked to do things to my students that I felt were wrong. One teacher explained that the "reform" consultant who came to their school suggested that they stop teaching writing until reading scores came up. WHAT? 
That is not reformed education, it is deformed. 
Talent matters in education, Duncan said. I could not agree more. He should start by looking inside our own country at some of the best and brightest that are here, doing good work that has nearly been shut down under My Child Left Behind. 

Monday, December 15, 2008

genetic basis of autistic behavior?

I have often wondered about much of the psychological interpretations and therapies suggested for my daughter's autistic type behaviors. Though they are more politely couched, they are not far removed from the refrigerator mother theories-- that autism was a psychiatric disorder caused by the mother's rejection of the baby during pregnancy. Reading an article today about the behavioral impacts of mutations on the MecP2 gene made me more curious than ever. (Science Daily Sept. 26, 2008. Mapping the Nueron-behavior Link in Rett Syndrome.)