Thursday, June 7, 2012

IEPs: School District Versus Independent Evaluations

We are lucky.  So far.  Although Mister Man is a special needs child, our school district has never presented us with any issues around providing therapies or accomodations for him.  When he was in private school, that wasn't the case, as they weren't set up to handle IEPs.  While they made some accommodations, when Mister Man was in kindergarten, we went for an outside evaluation to gain some additional insights and ideas of how to make the classroom an smoother experience for everyone.  And I'm glad we did.  That's when we got Mister Man's official autism diagnosis, and the pediatric neurologist did a great job in coming up with other ideas to make life easier for Mister Man.

There are others, however, who aren't nearly so lucky with their school districts.  Their schools aren't so cooperative, or they want to do an internal evaluation with someone who may or may not provide results that reflect your child's best interests but may reflect the district's interests or may be someone who just doesn't have the right expertise to fit with your child.  That's where you need to start thinking about whether an school district evaluation (free) is the right way to go or whether you want to conduct an external evaluation (generally at your own expense, though often covered at least partially by insurance) and bring those results to your IEP team.

There was a great presentation at Autism one by Dr. Mitchel Perlman on this topic, and I sort of wish that I had known much of this before we had taken Mister Man to have his evaluation done, though ours did turn out fairly well - mostly through luck and not skill, however.

Part 1 - Evaluating the Evaluator
Part 2 - Assessing the Assessment

What do you look for in the evaluator?

Detective, Scientist-clinician, maverick
As a detective, your independent assessor evaluates your student and the data.  The data generally is overlooked, especially the more green the evaluator is. When we investigate the student, we gather files depending on the needs of the child - medical, school, special ed, juvenile, probation - then perform interviews and observations, experiencing your child as you experience your child.  The observation may be in the home, school, community, office - depends on where you feel the evaluator will best experience your child where you want the evaluation to take place.  You want to get information from tests, but it is just one small portion of the entire independent evaluation.  What we're talking about is something a school psychologist can't do because of time.  As independent evaluators, we have the time to do this.  This way, you can look at the school report and see what it says versus an independent education evaluation, which should be much more comprehensive.

The autistic community needs to do much more of the observations than testing - depending on how testable your child is.  We need to see the whole range of behaviors in order to understand your child better. 

Testing is just a small portion of the report.  A good evaluator will investigate the data.  You have to look at the data to see what you have.  It's important for the examiner to be less dependent on the scores and subtests names.  Just because the test author labeled the test visual discrimination, that doesn't mean it's actually testing that.  It's what that author happened to label the test that has some relationship to it of some sort, but it doesn't necessarily completely evaluate it under the types of things we'd do on an every day basis.  He has to fight this in IEPs all the time.  The names may be ok for the general public, but it may not be testing it for your child because group data and individual data is totally different.  Again, there is no population that there is no population that this is more true for than the autism community because they don't follow developmental lines.  Because tests are normed developmentally, it may not do that for your child, which takes more detective work on the part of the evaluator to see if the data matches the child.

Interpreting the data:
How many children are truly doing what the test states?  to, on, in, cat - how many kids go t-ooo, to!  It's not reading decoding, it's word recognition.  Nat, tiff zoop - does your child do that there, or do they use subprocesses that are word recognition because they're fluent?  The test may or may not work for your child in testing what they state they are.

Items on the same test may not be testing the same thing.  If the child is missing a lot of items on a particular test, look at the items to see what they are missing.  Are they the ones that are really requiring a social nature where that's what it's testing and not the "sequencing" that you expect.  Make sure you talk to the evaluator to see if they do an error test to evaluate the errors to ensure that the test is valid for your child or what it does test.

The burden is on the test users to be better than the test they use.  The more green the person is, the more difficult that will be.  When they exit school, they will execute the test flawlessly.  The interpretation is the challenge because they just don't know what they don't know.  It's very important that the examiner you choose is someone who comes armed with a certain amount of research knowledge, clinical expertise, and theoretical sophistication.  It just takes experience to do this.  They dismiss data they already have or they gather the wrong data because of the tests they administer or they misinterpret the data they do have.

The first thing he does, he needs to see the files.  He will read through those and make some hypotheses and then start to know what questions to ask and what to evaluate.

Testing, including IQ tests, are samples of behavior and not exhaustive.  Tests assess functioning under fixed, experimental conditions.  Some processes we are able to remediate, so the test won't be the same going forward.  Test the child to find the strengths and weaknesses, then remediate the weaknesses.  Test the child again, and we have killed the prediction from the first test by providing the appropriate mediation.  We want the child to not qualify in the same rubric after we've remediated - data isn't there to say "this is your child" - what are you going to do to fix it?

we need to give the evaluators information that you have that the evaluator can't see at this point.  Take video to show the behaviors in action.  Create all sorts of video clips.  When they first started doing this, the mother of a six year old won an IEP to see what the child was like four years ago.  Give all the examiners, including the school psychologist, what the child is truly like in other situations.

Especially if you do interventions, create a chart of what your child was like in various points.  October - Jo could not respond to yes/no questions appropriately.  march - Jo could respond to yes/no questions for desires.  June - Jo can do all that and also to open ended questions. Also h has generalized all to across settings.  Do this for all areas where there is improvement - ability to go to a grocery store without the child running.    This is what the hearing officer wants to hear; how is your child a different person?  Show how he is now participating in the community, interacting, etc.  It proves what you suspect.  This is data that you need.  This is not testing.  This needs to be a part of an IEP, as you can't expect the examiner to pull it from you.  What is different now as a result of what changes you've implemented.

You want to show the learning trajectory before the placement change and after the placement change, especially in RTI day and age.  Is the intervention making a difference in your child.  If you have made a change, be sure you share this with your evaluator so they can plot the trajectories and can talk about it.

Strict adherence to scores can be entirely misleading.  Why would you give a verbal test to someone who has verbal deficits?  This taints to score applicability, and the implications that the erroneous test scores provide create issues.  You can't simply then average the two scores.  It's like having one hand in a fire and one hand in a bucket of ice and averaging it to say I feel just fine.  You'll never see an IQ test where all the subtests line up perfectly, and you don't want them to.  While they all test the IQ, they have slightly different parts of IQ.  We don't want the subtests to test the identical thing; we want them to test slightly different things or get at them in a different way.  We want them to be similar but not identical.  They also shouldn't be completely divergent so you can't pull a full scale result from the ones that are completely divergent.  Too much variance means that they aren't measuring the same thing.  It's up to the school psychologist to explain where the true score lies given divergence you see.

A neuro-psych approach means you don't take just one view.  You take all the data and look at it to see where the child's strengths and weaknesses.  In autism community, it separates into two very different visual issues.  The difference between visual spatial and visual discrimination.  "He's better visually than verbally" - it breaks down into these two areas all the time.  Visual spatial is when the eye eats everything at one time, it sees everything at one time - the marquee of the mall says you are here, where the shop you want and you know where you want to go.  Then you can break it down linearly into how you need to get there.  Visual scanning is different.  Whenever you see the soccer ball next to the dog in that order, then time this.  Interesting to see that when they scan the first line, they will then draw a line across and then down to the next line or cover up lines so that they can appropriate find the right place.  They have visual scanning issues, hands down.  If they skip a line or do a line twice, then they will do this with reading 100% of the time.  Reading is visual scanning.  If they do poorly or have to compensate, they will have issues reading.  This is where you would refer to vision therapy.

The scientist-clinician understands that too much data can cloud the diagnostic picture.  Read the file, then make some hypothesis.  Make a priori predictions - I predict that this will happen if I do that.  It's powerful to make an advance prediction and test it out to see if it comes true.  When they write up the report, they will generally refer to old files - this should be done before testing so that you don't have the same test given over and over again.  It's not a good use of resources.  Ask your independent educational evaluator what tests you are going to give your test.  They should not know what to give yet - they should ask what you want to get out of it and also they need to know the history of what your child has taken in the past.  Many tests cannot be repeated given the function level of your child.  If they tell you tests X, Y and Z, hang up and find someone else.

Wording and reports are poorly done frequently.  Below average and below the average range is a very different things.  What is a personal weakness an what is a normative weakness - that needs to explained to parents.  Person has a bad accident and is in ICU.  How is he doing?  He's doing great!  Ummm then why is he there?  Oh, he isn't doing great, he's improved but it is a NORMATIVE good.  You need to clarify what that means because evaluations will say that there are improvements only.  It isn't absolute; it's normative.  The overarching statement becomes uninterpretable.  Doing "great" or doing "very good" needs to be clarified with examples.  A personal weakness is something that is relative to that personal child.  A normative weakness is a weakness relative to the general population.  You may be gifted on certain processes but not other processes.  Relative to gifted strengths, his weaknesses might be stronger than those of a child next to him.  That is a relative weakness for HIM but not for the general population.  You need to understand what the strengths and weaknesses and progress are in relation to.

They often do an average range for IQ - there is the 85-115 for IQ covers 68% of the population.  Is that really average?  90-110 is the coverage of 50% of the population, so this is the true average.  The typical understanding is the 85-115 range.  2% above 130, 0.1% above 145, 14% above 115

Examiner as a maverick - your examine has to be able to defend the evaluation in due process and not be afraid to do so.  You have to be very clear with the examiner before the evaluation what you want.  IF you are shopping for a diagnosis for funding or a home program, and if this is something that the evaluation is not showing this, then the evaluator needs to tell this before the evaluation is complete.  Otherwise you'll get the same standard results that don't get at what you need.

You want to be able to ask your evaluator if you can stop the meter - if you aren't going in the direction I need to go, can I stop the evaluation.  If it's going to be useless, there's no reason to go on from there.  They should charge by the hour not a mass at the end.  Maybe come in for a few hours to see if the child is even testable or the direction is going in the right way and then decide to do a full eval or not.

The examiner does not need to limit recommendations to the district's menu du jour.  If the funding is available for 10 hours per week, they will recommend 10 hours per week.  You can't limit to what the funding covers but what the child truly needs.  The examiner can look to see if the district can meet the child's needs, but the recommendation needs to be what the child needs.  Many district will step up to the plate and buy the software they need or find what they need to help the child - they just don't know right now.  The examiner also does not need to make recommendations only related to FAPE.  It doesn't mean the district is responsible for providing it.  You can ask for everything the child may need, even if they district won't or can't provide it if it doesn't relate to FAPE.  You need to clarify what is or isn't related to FAPE so the examiner doesn't waffle when meeting with the district or in court.

Target placement.  What processes can be remediated and what processes can be supported based on testing.  For severe dyslexia, where you've already tried to remediate where they still can't read or write at a particular level at age 12.  They need to support those processes and not remediate them at this point.  You can train the child for what tools they can use to make life work.  For example, you want to support certain processes while trying to remediate them.  As they get older and the remediation isn't helping, then start to focus on the supports. 

You want the examiner to write them as if it were his child.  What would you do in priority order, and when would you do it?  If I only have $X to spend, when would you spend the money and on what programs or interventions to maximize the results.

Part 2 - Assessing the assessment
The files are so important because a good part of the story has already been told. They haven't been told completely or maybe not correctly.  Until they see everything ,they don't know what they don't know.  You want academic and psychiatric and everything, including teacher narratives.  ADHD is typically diagnosed in kindergarten and first grade.  You can get great things from the teacher narratives that are otherwise missed.

He loves SST meetings.  Student Study Team meetings, it's where they document all the problems the child has and none of them are going to be worked on.  Get those notes because they lay out all what the school knew....

The IEP notes in the school files are key - what they write in the IEP "seemed normal to me" may not be reflective of the notes taken that day. 

IEP goals - chart the goals from year to year.  If it's a reading goal, put it in reading, ditto with language, occupational therapy, etc.  Go back a minimum of three years in a row.  This really shows if there has been progress.  If a person has been struggling in math, why is there no goal written for math.  IF they have made no progress in an area, why are there suddenly no goals in that area.  Do this and hand to the independent evaluator.  This is also helpful for teachers prior to writing the IEP goals for the next year.  it also shows whether you have been provided FAPE or not.  While it is helpful in a due process case, this is helpful in general for all IEP meetings.

Functional programs - they are generally not diploma bound.  Look at the CARDS program.  They sequence the goals.  It shows how to remediate that particular area of the goal.  It helps spit out the goals.

The interviews - it's very important that you tell the examiner what you've done to bring your child to where he is today, especially those who are on the road to being recovered.  If someone says your child doesn't have autism ,that's a great compliment but they have to understand what it took to bring the child there.  If it's an SLD child and you're doing 3-4 hours of homework a night, that's why they are succeeding in school.  Teachers and everyone else need to know what we're doing as parents; otherwise, they can't factor it into the progress your child is making or what else they need to do.
My biggest takeaway for this one was the relative norms.  What's "great" for my child may not be "great" for a "typical" child.  I want to know what "great" means.  That's where the details come in - and I need to remember to ask those questions!


anymommy June 8, 2012 at 10:21 PM  

What an incredible resource for anyone facing this issue. This kind of sharing makes me wonder how parents survived before the internet! Thank you for helping people as they struggle through this process.

Pat June 8, 2012 at 11:36 PM  

I love that you are so on top of these things, Michelle. What better advocate can your son have than you, his mother. Keep on keeping on!

Not a Perfect Mom June 11, 2012 at 8:43 PM  

So many parents don't realize the rights their children actually have in the public school system and get somewhat bullied into what the school recommends, though it may not be what's best for the child but for their budget...and that's a shame...
I will never be afraid to stand up for what I think Brooke needs....

Sandra June 12, 2012 at 10:56 AM  

Did Mister Man get a new evaluation recently by the district now that he's in public school? So far, I do feel lucky that our district has our kids' interests in the right place. DS' school contacted me about getting him a 504 Plan. I wouldn't have known about it otherwise.

Michelle June 13, 2012 at 3:28 PM  

Stacey - I wonder often how people survived before the Interet, but ... we did. Somehow ;) And oh how I wish these sorts of resources weren't needed, but ...

Pat - Thanks :) I can only hope that I'm able to help my son and others.

Holly - Oh yes the lack of knowledge by parents is a huge factor. And I'm not even near as knowledgeable as I should be. But every little bithelps, and I hope I help some. Good luck with you and Brooke!

Sandra - He hasn't yet because he was only there for a few weeks. We'll get the process started as soon as we get back to school. And it isn't our DISTRICT but the SCHOOL we're in. Huge difference across the district, sadly.

Sandra June 13, 2012 at 3:30 PM  

Oh, I didn't realize that. The SCHOOL is great. We're part of the lucky ones.

Michelle June 13, 2012 at 3:57 PM  

Sandra - You have no idea. Talk to a few parents at other schools, and it's just eye opening. Count your blessings!

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