Saturday, December 18, 2010

Evidence of need for system change: Another CSE case study

I attended a CSE meeting for a child who has an autism diagnosis. This child previously received EI and CPSE services and was declassified upon entry to kindergarten. The parent called the meeting for CSE consideration because of the severe functional problems the child was having in the classroom. The school wanted to 'give him more time' despite the problems he was having because in their perspective many kindergarten children haven't been exposed to school environments and that is why it is reasonable to expect that there is a wide variation in skill levels of children that age. I suppose that is true, but I guess they forgot to remember that he received EI services and CPSE services and has autism.

The school-based occupational therapist presented a boilerplate evaluation that stated the child was normal in all areas with the exception of atypical scores on a Sensory Profile. In the entire four page evaluation there were three or four narrative statements that were specific to the child's performance. The test scores were also presumably specific to the child. The rest of the report was generic and basically descriptions of the tests that were administered. OT was not recommended for the child.

The parent brought the child to me for a private evaluation. I repeated some of the same tests because I was concerned that perhaps the assessments were inaccurate based on the expressed concerns of the family. I was pleasantly surprised to see that he DID score in a typical range on some of the tests, for example, the VMI. This is a test where children have to copy shapes - and it was obvious that he had prior exposure to copying shapes because he replicated them flawlessly.

However, the test doesn't measure HOW a child copies the shapes. This child copied them with atypical approach, often using right to left and bottom to top pencil strokes. The forms were also accurate, although they were reproduced in a segmented fashion. Also, the child held the pencil with a fisted grasp. There was no mention of this on the school OT evaluation. The OT evaluation included a two paragraph description of the VMI but stated nothing about the child's performance outside of the test score.

I don't usually give the Peabody to five year old children because I find it is not as sensitive as other assessments. However, I knew that he couldn't button and I knew that he had an immature pencil grasp so I gave the test knowing that it would be another point of documentation that actually showed where he was having difficulties. Also, I knew that we would have to re-assess him for annual review in the Spring, and I wanted to hold back the most appropriate assessment for that time because generally you want to avoid using the same test repeatedly within a constricted time frame. In the Spring I would like to give him the Miller Function and Participation Scales, which I believe will accurately capture the nature of his functional performance problems. That test also requires a lot of direction following, and I like to use that test when children ALREADY know me and there is a better chance that communication problems or shyness will not interfere with test participation.

Anyway, he scored below the first percentile on the Peabody Fine Motor Scale, and that dragged down the Fine Motor Composite rating as expected. This data didn't seem to move the school based therapist though, who couldn't change her position that he was able to copy the forms accurately on the VMI.

So we talked about other issues like the atypical fine motor skill, the atypical writing approach, his poor visual attention, his inability to dress independently, inability to manage buttons, his clumsy gross motor skills, his inability to answer 'wh' questions and interact dyadically, his inability to effectively interact with other children in play, and his inattention to social convention (like walking out of the kindergarten bathroom with his pants around his ankles). The OT stated that she would never write a goal to improve pencil grasp if a child scored normally on the VMI, and that the other issues were "not OT." She was willing to provide the classroom with a sensory diet, as if that will solve all these other issues.

Sadly, the oddity of this meeting did not end with the OT. He is diagnosed with autism and the committee struggled with what educational classification to use. At first they wanted to use 'Other Health Impaired' or perhaps just provide a 504 plan. Then they decided that the severity of his speech delay would qualify him for speech 3 times weekly, but they would use the 'Multiple Disabilities' classification and state that he has autism and speech delay. They STRONGLY resisted using the 'Autism' classification despite direct documentation from a doctor that he has autism. That would have qualified him for more intensive language intervention as well as some training for the school so they would be better prepared to understand how to intervene. They gave him a classification that identifies the problems but does not qualify him for the necessary interventions. It was surreal.

Finally, we were all pushed out the door as the allotted time for the meeting expired. On every child's IEP there are statements called 'Present Levels of Educational Performance' or 'PLEP' statements. They summarize a child's strengths and needs and are a critical part of the IEP document because they help people understand the nature of the child's skill levels in the school environment and act as a guide for educational intervention. We left the meeting with these incomplete and inaccurate. "Just read them over when you get the document," we were told. "Let me know if we need to change anything. What's important at least is that we got the classification and services established."

So I guess we accomplished classifying him, but not with the classification that is most appropriate and would support the services he needs. I guess we also achieved speech therapy three times a week and OT once a week - although we didn't write goals, didn't write appropriate PLEP statements, and the OT openly stated in the meeting that she didn't know what she could do for the child.

The parent was happy, because this was the most productive meeting she has attended and prior requests to get him classified and services were denied. Although I am glad that she is happy, I was sad because the system has caused her to set her bar so low on this issue.

The system was willing to wait and see how he does in kindergarten, but it ignores the fact that he has required services his whole life and he has an autism diagnosis. The family is worried NOW and they don't understand why he was declassified and they don't understand why the committee acts as though the most important issue is about what terms he should be classified under - when the MD has already provided some very clear evidence regarding his diagnosis. Families don't understand why this process has to be so painful.

The people in the room seemed mostly kind, and other than the apparent administrative tactical maneuvering to avoid the Autism classification it seemed as though they wanted to help the child. I am a little puzzled over how I could have helped the OT. I understand the position that the child scored functionally on one of the tests, but there was an absolute inability to consider his functional participation OUTSIDE of those tests that he could score functionally on. Even when presented with other evidence like:
  1. long history of therapy participation because of difficulty achieving skills
  2. Notable motor delays
  3. Notable sensory processing differences
  4. Notable social and play impairment
Instead, the school OT lectured me on repeating the VMI and that my entire report was invalidated because I repeated a test that was recently administered in the school. Ironically the child scored identically both administrations of the VMI and copying circles, squares, and triangles is hardly an esoteric task for a kindergarten student. The whole concept of practice effect on a test that was not even in question was so irrelevant to the other evaluation findings I didn't even know where to start. I wanted to help them understand that this was a red herring argument but there was just nowhere to go in talking to this committee.

I understand that it must be intimidating to have another therapist come in to a meeting with a second opinion. It is not comfortable to discuss conflicting findings, and certainly no one wants to be wrong, or incorrect. However, as therapists we can't let our own feelings or egos get in the way of improving our own skills and providing the best possible services for a child. A impersonal boiler plate evaluation is not acceptable or appropriate. Failing to consider a child's individual history and needs is not acceptable or appropriate. Parents should demand and rightfully expect more professionalism than template evaluations where the only thing changed in the document is the test scores. If the systems you are working in place pressures on you to cut corners - don't give in. Fight back and improve the system.

Then I remembered my own advice.

We still have a lot of work to do, because although I wrote that advice nearly two years ago I don't know that I have seen enough progress on what we need to do to improve these systems.

1 comment:

Liz Ditz said...

Acronyms: I am guessing that CSE = something like "child study evaluation" or similar?

The handwriting issue in autism is known to be big, and (in my opinion) needs early and constant support --that classroom teachers aren't qualified to give.

Then there's my other pet peeve: expecting children in kindergarten to write independently...

What's up with the reluctance to give the child an educational autism diagnosis when he already has one from a qualified physician? That's a mystery....

Today's blog post at The Thinking Person's Guide to Autism had several links on Present Levels of Performance.

No wonder special ed parents are frustrated.