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.

Wednesday, December 08, 2010

One child's Christmas wish, as expressed to the OT

Lisa is ten years old and currently lives in a residential treatment facility for children who have emotional and behavioral difficulties. Her biological mother was addicted to drugs and Lisa was removed from her custody when she was four years old. She lived for a few years in several foster home placements and the most recent foster family had her for two years and intended to adopt her but they backed out at the last minute. There was a corresponding increase in uncontrolled behavior so she was admitted from another temporary foster placement to her current residential placement.

Lisa's current behavior is very erratic. Her everyday speech is laced with profanity. She is claiming that she was pregnant and just had a baby, but this isn't true. She is physically aggressive, sexually precocious and inappropriate, and has attempted suicide twice.

Lisa was referred for occupational therapy in her residential program because the previous foster family took her for a sensory-based occupational therapy evaluation that they pursued privately. The outside evaluation indicated that she had severe sensory processing difficulties and recommended the following:
  1. Wilbarger Brushing Protocol
  2. Listening to music, such as Mozart
  3. Diaphragmatic breathing exercises
  4. Early release from school so she isn't overwhelmed
  5. Increased intake of water
  6. OT Consultation to the entire residential program where she lives
The evaluation did not include any motor, cognitive, perceptual, social, or occupational measures. There was no developmental history and a scant social history.

I am calling this evaluation to people's attention because it represents such a horrific example of how we are not addressing needs. I would not be surprised to find out that this child does have some difficulties with emotional and behavioral regulation based on some sensory processing issues, but I do not expect that her gigantic problems will be fixed with a brushing program and a lot of water.

In fact, these kinds of recommendations are irresponsible and inappropriate. I am thinking of having the evaluator provide this intervention herself and see how much improvement is made.

Wouldn't it be interesting to listen in on that intervention session: "Gee, Lisa, it says here that you have been in 6 different foster homes, you were sexually abused when you were a toddler, and your biological parents abandoned you and were both addicted to drugs. Why don't you let me brush you and you can take a few deep breaths while we listen to Mozart. That should make it all better."

I am hopeful that some educators and practitioners and students will all read this and think twice the next time they talk about what would constitute an appropriate evaluation, what our scope of practice should include, and how we should be conducting ourselves as professionals.

Please keep Lisa's Christmas List in mind next time you think about how to identify a child's needs. The OT evaluator thinks that Lisa needs a brushing program, lots of water, and early dismissal from school to address her sensory needs. Lisa thinks she needs a car, a Christmas tree, a home, a dad, and a mom.

Which one is closer to being correct?