Sunday, October 23, 2011

why is public education so adversarial toward the parents of special needs children? a first consideration

For the past fifteen years I have been representing children (my own and others) in 504 and IEP meetings around the mid-Atlantic region (including Maryland, Pennsylvania, Delaware, New Jersey, and New York).

My role is "parent advocate," which is virtually the only loophole favorable to parents under the whole IDEA and 34 CFR structure that governs the education of children with disabilities and special needs.  Parents have the absolute right to bring in any advocate they please (with some restrictions on actual attorneys) without prior notice to the school district.

When you arrived, unannounced, as a Parent Advocate, a number of things generically happen.  First, there a lot of shuffling and whispering, as the others on the "team" tell each other that there's an outsider in the room.  Then there is the inevitable but ever so polite request that I provide my bona fides for knowing anything at all about public education or special needs children (they, of course, being school district employees, are immune to such questions).

Then they start the meeting.  If you've ever been a parent unhappy with your child's educational experience in a special ed or 504 disability setting, please feel free to skip the next painful section:  you've been through it too many times.



The "team" will consist of all your child's regular ed teachers, a special ed teacher, a school psychologist, a school administrator, and sometimes a school nurse.  They will already have prepared (and filled out) all the paperwork they want you to sign, completely ignoring the IDEA requirements that the parents--as technically part of the team--should have been a part of the discussion about what to put on the paper.

Then they will say, "Let's have the teachers give us an update on little Smithfield's progress," with an endearing smile.  This is not an improvisation.  All of the teachers know, and have been coached on, their lines.  One after the other they will tell you the sad story of (a) how many assignments Smithfield has failed to turn in; (b) how many tests he's failed; (c) how hard it is to keep him on-task in the classroom; (d) and how heroically they have struggled to do better and provide the necessary accommodations, but--alas and alack--it's just not working.

When you hear that repeated five to seven times without a single variation by all your child's teachers, you will then begin to understand why parents dread IEP meetings.  By the time they've beaten you down with all of your child's failings, they hand you an IEP plan that promises to do exactly the same things that they have just told you are not working, and demand that you sign it.

If you challenge one of these narratives, they will virtually gang-tackle you to explain why any other accommodations you might want are unreasonable, and ask you to realize that you may be butting up against your child's inherent limitations, and we might have to consider taking Smithfield off the diploma track, or putting him into an alternative (say "warehouse") program.

Because you are inherently hostage to two instincts, you cannot effectively represent yourself.

1.  You feel the need to defend your child (and your parenting) and possibly even his/her disability.  Start doing that and they've got you.

2.  Most critical:  you feel that if only you could explain the reality of this child to these obviously caring and concerned educators, if you could only get them to see how a few little changes would change Smithfield's life, they'd come around.

They won't.  That's not generally the purpose of an IEP or 504 meeting.  It is generally the purpose of that meeting to get the parents to sign off on what has already been decided is in the best interests of the school district, not the student.

I will prove that to you in a moment.

Here's why you need your own Parent Advocate:  to derail that process and engage them in fact-based and data-based converation about how they are failing to meet the child's needs.

The most murderous look I ever got at an IEP meeting was the first time I ever derailed the teacher-child character assassination waltz.  As the first teacher unloaded, it came to me.  I stopped her, and said, "In the interest of keeping things positive, could you tell us about one or two things little Smithfield is doing well?  What are his strengths?"

She fumbled for a minute and came up with "not disruptive" and "good disposition."

Then I turned (and de facto took control of the meeting away from the administrator) and said, "Here's what I think we should do.  I think each one of you should open up your comments by saying two positive things about Smithfield--but let's be careful not to repeat anything anyone else said."

The murderous look came from the school administrator, who couldn't think of any reason to object to saying good things about a child.

So when we finished the litany, I looked at my notes, and said, "OK, here's a list of the things Smithfield does well, can I safely assume we're going to focus the rest of the meeting on building on those strengths to meet his needs?"

Not any way to say, "No" to that, is there?

Which is tough when everybody at the table knows that the document they came in with does not, after all, start with that presumption.

If the meeting is going well, and the school staff really does have concerns for the child's success (not always a given), then this is where the real work begins.

If not--let me tell you some horror stories.

How about the sisters in New York who both had a diagnosis (like my son) of Chronic Fatigue Syndrome.  Despite the fact that this diagnosis was provided by the doctor who heads the CDC Task Force on CFS and the former Chief of Internal Medicine at Mt. Sinai Hospital, the school district  insisted on trying to diagnose both girls as depressed rather than physically ill, and even filed a complaint with Child Protective Services accusing the mom of having Munchausen's by Proxy.

Then, when I showed up, they were scrambling all over themselves to commit the district to "a new beginning" for the girls to whom they had denied any educational services at all for two years.

How about the district in nearby Pennsylvania that disenrolled an Honors student with Fibromyalgia from all of her AP classes, and re-enrolled her in Basic Math and English ... without informing the parents!?


We needed an attorney to fix that one.

How about the English teacher in a small state we won't name, who told me in the middle of an IEP meeting (with the school principal present!), "It's really a shame we are waisting time on this meeting.  Twenty years ago, a child like your daughter would have been properly institutionalized and the public schools wouldn't be forced to deal with her."

She was not reprimanded nor removed from teaching my daughter.  (I was very new to this fifteen years ago.)  One of my few genuine regrets in life is that I did not reach across the table and back-slap her.  It would have been worth being arrested for.

How about a Delaware school that kept two sets of books on the progress made by a student on an IEP? One was to show the parents that the child was failing, the other was to show DOE that the child was succeeding.  Unfortunately, the secretary accidentally gave the parents both sets.

How about a school psychologist in the Delmarva region who, failing to have a child illegally re-classified from "Learning Disabled" to "Educably Mentally Retarded," took advantage of the parents transferring the child to another school district to forge all the documents to make it look like they had agreed?

[By the way, both of these cases occurred in the late 1990s, and both were brought to DOE's attention with full documentation.  In both cases, DOE claimed it had no authority to intervene.]

I could go on.  The horror stories are legion.  The point is not that school employees dealing with special education are bad people, but that they are hired and promoted primarily based not on their ability to succeed with special-needs kids, but for their ability to keep their departments under budget and complaints to a minimum.

Parents, in that sort of paradigm, are obstacles, not partners.

Why does it work this way?

That's what I'll talk in more detail next time.

7 comments:

Kilroysdelaware said...

Parents need to bring a note pad and keep a record of who is doing what. I wonder what would happen if a parent pulled out a small portable digital recorder?

I remember the sit downs with Dave Sokola over DSTP and those damn 3 tiered diplomas and how they applied to special need students. I kept saying the IEP supersedes DSTP and if a student mastered his IEP objective he should be deemed superior in his own right.

I am not sure where special ed falls within RTTT and college career readiness and I don't want to see these kids be pushed aside.

pandora said...

I have experienced what you describe, and my child is not a special needs child. Granted, I only experienced it a couple of times, whereas I'd bet this is routine for parents of special needs children.

There seems to be a "gang" mentality in these meetings. I've scheduled a meeting with the teacher and when I walk in, there are a group of people (teachers/administrators) ready to tell me what "we" are going to do. I've ended up feeling railroaded.

There's definitely an Us against Them vibe in schools*, and I've experienced the inevitable request for my bona fides regarding education. Clever trick, and one that worked on me for the first few years.

Here's the heartbreaking thing, and one you've articulated so well. In situations where there is a problem, why do parents leave these meetings feeling so depressed or stunned, or even worse, angry?

*Not all schools. I say this because I know what's coming if I don't. A very sensitive profession. ;-)

Anonymous said...

I'm going through this right now with my daughter; it's reached the point where the only action the school district is willing to take is to dump her at a facility that re-uses techniques that have already failed, and they're filing truancy charges against us because we refuse to send her there. I could fill pages with lists of how our actions have been constantly misrepresented, information has been conveniently left out or changed to suit the situation, stopping in to sign a release form has been written up as a fully-attended "meeting", etc.

Steven H. Newton said...

Anon, if you are in this region, please give me an email address in a comment that I can use to contact you. Maybe I can direct you to some assistance. I will immediately delete the comment as soon as it hits my mailbox so that it will not be up and published for more than a few minutes.

And stay tuned for the next installment.

Anonymous said...

We've been talking with PIC for a while and have gotten in touch through them with a law firm that handles this sort of case on a contingency basis, so at the very least we're proceeding from this point on with some legal representation; the still-open question is how to figure out what course of action is going to be best for our daughter, and how make that happen. The firm we're working with also has some suggestions on independent testing to get some more specifics on her issues and how to handle them. So the slightly-longer-term outlook is a little more hopeful than it's been, so long as we can get through the immediate issues.

Steven H. Newton said...

PIC is good but often not willing to be adversarial enough. Your attorney MUST HAVE a successful record of working with these cases before you pay a dime. Make that attorney send you to former clients.

Good luck.

think123 said...

I have a daughter living in a group home in Delaware. It's been great, but Delaware is really negligent when it comes to dental care for the disabled. Disabled adults in groups homes are denied treatment even when they have abscessed teeth, as was the case with my daughter. People die from untreated abscesses. A girl in Maryland died from that kind of neglect, Maryland addressed the problem. Delaware considers an infected tooth different than an infected finger. They say there is no money for dental. Delaware is one of the few top tier wealthy states that denies proper dental services to disabled adults.

I am all for the economic development program, Fisker, the bank subsidies, all that. But when a disabled adult is suffering from an abscessed tooth and all you hear is there's no money. That hurts.