Death by IEP / Assessments and Access

There are no tests of potential (different from achievement) that are free from inherent bias for individuals with CVI. The items are often based on content that is linked to visual learning and therefore, the scores will skew low

….and they certainly do.
Dr. Christine Roman-Lantzy

Cognitive assessment is typically based on how a child learns information including rate of learning, problem solving, and accuracy. For children with vision impairment, they have not had access to basic information.

How can you learn, let alone be judged on, information that either you cannot access or others have not given you access?

Dr. Sandra Newcomb

Hello fellow families of beautiful children with CVI,

Since it’s IEP season, I’ve been thinking about assessment tests recently.  As a parent of a child with special needs, I have watched my daughter go through a gauntlet of physical, developmental and cognitive testing from her earliest days.  It can be hard to watch.  It can be hard to hear the results.  Whatever the results, I want them to be accurate.

As the parent of child with CVI, I have learned that there is a lot to be aware of when someone says they want to assess your child.

When Eliza was about a year old, a new occupational therapist wanted to assess her.

We were still wrapping our minds around the diagnoses that had quickly followed our girl into the world:  microcephaly, cerebral palsy, global developmental delay, cortical visual impairment.  The learning curve was less a curve than a straight 90 degree angle to climb with no climbing gear,  and occasional boulders of unforeseen complications – seizures, asthma attacks, severe GI issues, little sleep – raining down at any given time.  We were trying to find our way.

This was soon after our Neuro-Ophthalmologist had told us there was nothing we could do about CVI. “Take her home, treat her like a blind child, come back and see me in a year.”

This was soon after I had ordered Dr. Roman-Lantzy’s book and sought her out for the first time.  I was just at the beginning of understanding what Cortical Visual Impairment was.  The message that Eliza’s vision could improve, however, was loud and clear.

Dr. Roman-Lantzy’s work offered me a glimpse of hope, especially because many of her 10 CVI characteristics explained Eliza’s puzzling behaviors for the first time..

Eliza was a light gazer.  She stared at light coming in through windows, lamps, or any strong light source.  She stared at fans.  She reluctantly used her peripheral vision and only if she had to. There was a long latency period between the time she would glance sideways at an object and then reach for it (usually with her head turned away from the object).  If you did not know to wait, you would miss her processing and getting organized enough to reach for something she had seen 15, 20, 30 seconds earlier.

She would not look into faces.  Her head often hung down, especially in new environments.  The novelty of new places was too much sensory input, and often, caused her to have screaming fits.   She was in Phase I.  I was still learning what that meant, but it was a place to start.  It was a foot hold in my 90 degree upward climb.

The new occupational therapist wanted to assess Eliza’s fine motor skills to establish a baseline to measure future progress.  Made sense to me.  I knew we had to get used to doing this.  We had to let the experts do their thing. Their keen eyes and knowledge would help me read my girl who was in many ways still a puzzle to me.  Their assessments would give us a fuller picture of Eliza and what she could do.  Or would they?

This is what I remember from the first assessment 10 years ago.

It was called the Hawaii Early Learning Profile.  I remember because the acronym for this assessment is HELP.  That was very comforting.  Boy, did I need HELP.  And, why Hawaii?    What did Hawaii know that the rest of the United States did not?  Maybe, there would be poi and hula dancing involved.  (Remember, I was not sleeping and it gets very busy in my head even when I’m well rested).  The HELP would help.

Standing in the OT’s office with one-year-old Eliza on my hip, I read over the developmental charts in the HELP.  I noticed that a lot of what was assessed required that the child had typical vision.   I mentioned this to the therapist.  She agreed that was an issue.  HELP, like most developmental assessments, did not account for vision loss.  But, she would write a note that Eliza had CVI.

I continued reading the chart of developmental milestones.

“Looks at picture” – Nope.

“Plays with hands, feet” – Hasn’t found them yet, so no.

“Looks at place where ball falls down” – Uh Uh.

“Plays Peek-A-Boo”  – Well, doesn’t look at faces, so pass.

“Searches with eyes for sound” – Can we substitute stares at light bulbs?

“Places cylinder in similarly shaped hole” – Okay, I don’t even know where to begin with this one.  Just no.

“She is technically legally blind,” I told the OT.  “She doesn’t look at pictures.  She doesn’t look at faces. New sounds startle her. Do you have a different assessment?”  

The OT assured me she would mention Eliza’s diagnosis of CVI in the notes section of the test.

“Wait, what?  The central challenge to her ability to interact with the world will be a footnote?” (Okay, I didn’t say anything that articulate.  The “Wait, what?” is more like it.) 

To begin, she wanted to test Eliza’s ability to track a ball and to reach for it.  She put a light colored tennis ball on a school desk and rolled it to where I was standing with Eliza in my arms.

“Get the ball, Eliza!”  the therapist prompted.  The ball rolled off the desk.  Eliza was oblivious.    The OT looked apologetic, picked up the ball and tried it again.  Eliza stared at the fluorescent lights above us.  I stared at the therapist in disbelief.

“She can’t see the ball,” I told the OT.  “It is too similar to the color of the desk.  Can I put a piece of black cloth on the desk to make it easier for her to see?”

“No. We have to maintain the protocol of the assessment.”

“If she could see it, she might reach for it.” 

“We can’t change how we do the assessment.”

“So, the assessment will just be a series of zeroes then. It is going to look like she can’t do any of this if we don’t give her a chance to see what you expect her to do.  You’re not going to get an accurate idea of what she can do right now this way.  That’s like me asking you to run an obstacle course or do an algebra test in the dark. How would you score on that?”

“I’m sorry.  This is how we perform this assessment.”

“Well, it’s basically useless.  So, I think we are done here.” 

After watching the OT roll a ball my daughter could not see to her and then, scoring her as unable to track and complete the task, it dawned on me that the rules of this test were stacked against her.  Her development was going to chart a different path, a path this test did not accurately measure.

This was a new and strange idea.  I was slowly getting used to the fact that Eliza didn’t fit in anyone else’s boxes – not the pediatrician’s typical development questionnaires, not the stupid head circumference charts, and now, not even in the assessment for a child with developmental delays.

We were in unchartered territory.  We needed people who would think (and assess) outside of the box.  If the test did not apply to her, then the rules didn’t either.   I thanked the OT for her time, told her we would not be working with her, and took Eliza home.

I am not an expert in developmental assessments, but I have sat through many of them over the years both as an observer and an interviewee.  Eliza is far too capable and far too challenging to be relegated to “notes in the margin.”

I have since seen gifted  interventionists and therapists work with Eliza’s sensory challenges – starting with a thorough reading of her scores on the CVI Range.  I have seen them observe her intently for long periods of time.  I have seen them use trial and error when necessary, but always respectfully.

The kid faces enough challenges as it is.  She at least deserves to be evaluated in a way that reflects her true ability and potential.

And, the HELP was no help at all.  (Sorry.  It was right there.  Someone HAD to say it.) 

---

Fast forward about 10 years to a week ago, when I was sitting in a meeting with our IEP team at Eliza’s school.

Our search for FAPE in our CVI saga is a long and complicated tale. There have been successes and setbacks.  In the CVI spectrum, Eliza is on the complicated side.  She is non-verbal and has had a series of lackluster school placements.

Yes, she has delays in her physical and cognitive development.  Yes, she can learn.  Yes, these two sentences can co-exist.  You would be surprised how many people you have to convince of this basic fact.

This year we have had slow, steady success with communication.  On the other hand, she has also developed some behaviors that get her out of doing things she doesn’t want to do.  (That kind of cleverness doesn’t show up on cognitive tests.  And, will give me more grey hair than I already have.)

In this recent IEP meeting, a school psychologist confidently presented her assessment of Eliza’s behaviors and introduced the Behavior Intervention Plan that would shape them right up.  There would be a token system of bright yellow stars that Eliza would learn to associate with immediate rewards.  Eliza will comply!  Eliza will be rewarded!

Eliza is currently in mid to upper Phase II now.  With private consultation and work at home, she has begun showing more visual curiosity.  We have worked on teaching actual objects in her environment first and then moving to 2D representations of these objects.  Recent research from CTVI Matt Tietjen has revealed that children with CVI struggle the most with symbolic representations of objects – cartoon drawings, illustrations, etc…   They need to learn the actual objects and then learn the pictures of the objects.  (Check out his class, “What’s the Complexity Framework” offered through Perkins elearning.  Seriously.)

This is what was going through my mind when the psychologist started explaining her token system to us.  They were proposing stars (symbols)  to represent a reward for a child who does not have a lot of external motivators. (I never said she was easy.)  I wondered if the psychologist had actually met my girl.

I wanted to clarify about needing to use actual objects and then move to 2D pictures.

I interjected, “You realize she has a visual impairment right?  She has Cortical Visual Impairment, so we have to —” 

“I know, I know.  High contrast.  We have to make the stars high contrast.”  The psychologist cut me off mid-sentence and began explaining her token system again.

I was reminded of something CVI Teacher Ellen Mazel said at a recent conference.

Ellen says that the most dangerous people she has ever met are

1. Teachers who have never heard about CVI

and

2. Teachers who have been to one workshop or read one article and think they are experts in CVI.

I knew I was sitting in this IEP meeting with someone who had read an article and decided she knew CVI.

She was going to continue using the assessments and the strategies she knew (for children with – I can only assume – typical vision) without taking into account how Eliza has access to her environment.
By the way, not having access to your environment, not understanding what is going on around you will affect your behavior.

This situation is still a work in progress.

I am shopping for an advocate and hoping to win the lottery.  To be continued….

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What have I learned from these experiences?  What do I continue to learn?

When dealing with children identified with CVI, the CVI Range (Roman 2007) is the assessment that is the foundation of all other assessments.

When you are the parent of a child with CVI, be wary of the assessments used by your intervention or educational teams.  There are not many developmental assessments that take visual impairment into account.  Ask a lot of questions.

Ask them if they know what incidental learning is.  Our children are NOT incidental learners.  This fact should guide how therapists and teachers interact with them.

If you don’t feel comfortable with the answers, ask more questions until you do.  Or, ask for new providers.  You have every right to work with therapists and interventionists who have your child’s best interest at heart and who understand how to work with a child  with CVI.

Regarding other assessments for young children with sensory loss, I found interesting information here:

http://www.wonderbaby.org/articles/development-charts

and

http://www.perkinselearning.org/scout/assessment-young-children-visual-impairments

I am also aware of The Oregon Project for Preschool Children who are Blind or Visually Impaired. It is a comprehensive assessment and curriculum designed for use with children birth to six who are blind or visually impaired. It can be used by parents, teachers, vision specialists, or counselors in the home or in the classroom setting.

 

I am not recommending one assessment over another.  Each child with CVI is unique and requires a multi-disciplinary team approach of therapists, interventionists, teachers, and doctors.  Some of these team members must have a thorough understanding of CVI.

We, the parents, are team captains.  If your team proposes to assess your child with developmental tests that do not give your child access, you may need to discuss what other methods of assessments are available.

If no one on your team says you need to get a CVI Range completed for your child by a Perkins-Roman Endorsee, then, you need to lead the way.

Inaccurate results are not going to help your child.  Inaccurate results are not going to help your child’s therapists or educational team.

Even when it comes to assessments:

And, to all of those folks who want to test our children with tests that do not accommodate them…

To all of the therapists and teachers who have read one article or attended one workshop on CVI and then try to fit these kids in the margins or the footnotes, Eliza and I would like to respectfully say,