Assessments: Fool Me Once - Shame On You!

My daughter who has Down syndrome and Autism and is primarily non-verbal at this time was recently given a psycho-educational evaluation by one of the school district psychologists. He gave her a few tests, one is the WASI which is for verbal kids, she had a lot of trouble with it. In his defense, he also gave her a non-verbal test, the NNAT. Their website, which the school psych could have read, says that the NNAT “is frequently used as a screening test for gifted program entry.” Also, “The NNAT® is commonly considered to be a difficult test.” Maybe that's why she seems to have made no gains, perhaps even regressed since her last testing, when in fact anyone who knows her has seen real improvement in her functioning, in her speech, and in her behaviors. The use of this very inappropriate test makes it appear that she is not getting any benefit from the services the district is providing. This then becomes their excuse for offering no more services or at least severely limiting what services they will offer.

In addition, the "very qualified professional" they used to evaluate our child called her "mentally deficient", deficient for what? Deficient for doing brain surgery I would agree, but too deficient to gain in a special education program? Early on we believed what we were told by the people at the schools, we believed all the people in the schools who told us that she couldn't have Down syndrome and autism together when in fact they were mistaken, or wrong, or I don’t know, possibly even intentionally keeping her from getting the help she needed. Mentally deficient is not a term used by any professionals for diagnosing children with learning disorders or other pervasive developmental disorders. It is NOT in the Diagnostic and Statistical manual of Mental Disorders or in the ICD-9 used by physicians. It is also insulting and inappropriate.

We as parents must be vigilant in areas we never expected in order to make sure that our children receive the fair and appropriate public education they are to be given by law. Luckily, thanks to our attorney I have learned to check every test on the internet that is given to my children. The people who sell the tests want to make sure that the districts and the evaluators who purchase them know what the tests are for so they give pretty good descriptions. We can’t always know why someone might give our child a test that seems inappropriate without asking because there may be information in the test that isn’t advertised, but this kind of testing can’t really be justified! It seems to me that every time we have an IEP it is another opportunity for me to learn, they may fool me twice, but never with the same bag of tricks.

Creativity Key to Getting FAPE

The law says that the district has to provide an "appropriate" education so they fall back on that. But who is to say what is appropriate? I am currently trying to get my hands on the list put out for Speech and Language Therapists (SLP's) of what is recommended for different speech diagnoses. I believe that will help us in settling what is appropriate, at least getting us closer for what appropriate services are for speech. I doubt we will ever get what they suggest without attorneys and due process which is quite frankly very difficult emotionally to go through, not to mention expensive if you use an attorney. It seems that having an actual therapist there to advocate for what their report says carries a lot more weight, and we have had ours done as IEE's (paid for by the district) and they have insisted on the person who writes the report attending the meeting. Even if the district doesn't insist and therefore will not pay for them to come, I would highly recommend paying them to come to the meeting. You can request that you go over their area first and let them leave as soon as their portion is done to save some money.

I try to avoid any SLP who will just write in whatever the district tells them to give as far as what type and amount of services, this is unethical and tells me that the person is really there just for the paycheck. We currently are fighting for continued speech while in "Stay-put", but we have two different speech evaluations by the same person, one dated the day before the districts "pre IEP meeting" that they aren't supposed to have recommending staying with what she already has and one dated the day after their "pre IEP meeting" that isn't supposed to happen that cuts their recommended services to 33% of what was recommended before that meeting they weren't supposed to have. Everything else stayed the same. I always look for this kind of thing or for the therapist to say something like, "they really need more, but we can't take them out of class for so many hours a week" because then we have them. Then they must provide a Non-Public Agency to cover what the child actually needs. Surprisingly these mistakes happen all the time. Especially when you get the teacher and/or the SLP (or whatever area you looking at) to work with you. I love to give them little thank yous at Christmas and at the end of the school year and offer to help with a party or two or three a year. My daughter's teacher isn't crafty, so I always do a winter craft for her. These kinds of things can get you the help you need in the IEP meetings (or at least little hints outside of meetings of what is coming). I really am not excessive, I give them $10 gift cards and some homemade cookies or candy.

Right now, our daughter is in Home and Hospital Instruction or HHI (due to recent surgery) and we are probably going to keep her there until we can get some real progress made. Her doctors have agreed to sign the necessary documentation and that way a teacher comes to the house for 1 hour per day of school for the week. That way we can do all the other therapies as needed and not interrupt her school day. It means that I have no time to myself, but it's worth it. I'm sure it's not a lot different for the home-schooling moms except that I get help in teaching her the academic things. They can be in HHI for many reasons, including difficulty with fluorescent lights setting off seizures, psychological needs, physical needs, severe sensory-motor issues that make the classroom too frightening or intense for the child to learn, really any reason. Our daughter learns much better in the home environment so why not use that to help her for the time being?

Creativity is the key in our quest for the proper education.

Hopeless? Or Could it be Lack of Effort From the District?

We were told that our daughter was beyond learning to speak at the end of third grade and that she would have to go to using PECS exclusively.  The message was, she was beyond salvation and could never be taught to talk.  We were told that they had worked very hard for 4 years and since our daughter had made no progress she couldn’t be helped.  She would no longer (Ha! Like they ever had!) be given any therapy that worked toward talking but would instead receive instruction only on PECS (picture exchange communication system).  We reluctantly agreed (sort of), although we knew deep down that this didn't make sense, they hadn’t tried at all.  We pushed for teaching our daughter to say her name in speech, even being satisfied with a one syllable nickname since two syllables were so hard for her.  The SLP agreed reluctantly to include this goal.  The truth is before this our daughter was given collaborative speech (which equates to basically no speech) and one year of speech in which the SLP would not give our daughter any time if she was having a behavior - she has autism, of course she had behaviors all the time!  And what else they didn't tell us was that the school should have been giving us help to manage those behaviors so she could learn (but that's for another post).  So the one year that she was supposed to get speech therapy at school she almost never got it because the therapist didn't know how to deal with a child with behaviors!     

So, the district has never (well almost never) given our daughter speech therapy, and now they say they won’t give it to her and blame her lack of improvement for why they won’t give it to her when in fact they have never done anything to help her improve! 

When she changed schools, and was actually given small group speech and was learning to say some words; she actually said a few 2 syllable words which had seemed impossible.  She also started to say her name.  Her nurse and I worked with her on her alphabet, and she has learned all of the letters, saying most of the letters very clearly at this point.  This is the child who would not be able to talk.  She now says her name pretty clearly, and she has uttered phrases such as “Mondo, it’s your turn” and “I can help” with surprising regularity.  This is not an over zealous mom talking, this is based on reports from Megan’s teacher (the only one who has been doing speech with her for at least the last three months and probably the last three years except for her short time at another school).

Now, also to add insult to injury…. it is near impossible to get insurance to pay for speech and language services when children are in school because this is supposed to be covered by school.  In addition the insurance companies are writing into their policies that they will only cover this type of service for people who have had a stroke or surgery or they will cover only  a few sessions a year, even lumping together speech, occupational, physical, and any other kind of therapy you can imagine into the few sessions they will cover per year.  This leaves our children with NO OPTIONS for getting speech therapy unless we are rich and can afford $85-130 per hour for therapy.  Some states, ours included (CA) have added protections for kids with autism, but they seemingly don't apply to kids with more than one diagnosis, like autism and mental retardation, which correct or not is often assigned to many kids with autism.   


The only way we have found around this is to get an Independent Educational Evaluation.  I will post more on this in another post, but the basic concept is, get an expert in the field (district personnel are NOT experts) and have them do an evaluation of your child.  You can have this done at "public expense" which means that the district pays for it.  These experts (if you find good ones) will diagnose your child and will suggest how much and what kind of therapy would be helpful for your child based on ethical guidelines, not on how many hours they are allotted or allowed by the school district.  The district will try to tell you which experts you can and cannot use but the truth is I would never use the experts our district recommends unless I have also heard through people I trust that these experts are thorough and ethical.  The ones recommended by the district may be recommended because they will say what the district wants them to say.