The IEP Story

September 20, 2007 @ 10:59 pm | Filed under: Special Education, Special Needs Children, Wonderboy

As some of you guessed in the comments, the meeting I alluded to the other day was a doozie. It will probably take me several posts to sort through everything. But let me spare you the suspense and say this: It ended well. I got what I wanted. But it took two hours of intense discussion to get there.

:::::deep breath:::::

Remember last winter when I wrote about getting Wonderboy’s IEP in place? Remember how I said:

Which leads me to a very interesting and important thing I learned at
the end of the meeting. I need to look into whether this applies to
California only or the entire nation. As my pen was poised to sign the
final paperwork, the psychologist notified me (as she is legally bound
to do) that once the parent signs the IEP, the child is officially "in
the system," and the parent can’t just decide later to pull him out of
services without a big to-do. From that point on, the appropriate district personnel (in this case, speech therapist) must agree that the child no longer needs these services in order to cancel them.

You know, I worked pretty hard to make sure my son’s IEP was worded exactly as I wished it to be, lest this section of the law come back to bite us later. But you can never, never be too careful. I should have been, it turns out, even more careful than I was.

The IEP says Wonderboy will receive 60 minutes of speech therapy a week. That’s what we did last year, in two 30 minute private sessions. He did very well, and because I was present during the sessions I was able to repeat the activities at home, daily. He made great progress and gained several consonant sounds. It was very exciting.

But the two-day-a-week schedule was difficult to juggle. He sees a number of other doctors, and that adds up to a lot of appointments. Add in the girls’ activities, and it makes for a great deal of running around. The speech therapist and I agreed that Wonderboy was making fabulous progress. When we started back up after the summer break, I said I wanted to cut back to once a week.

She was hesitant, worrying that if he only saw her once a week, she wouldn’t get as much out of him in the sessions. That wasn’t a concern for me: I don’t really care how much she "gets out of him" (meaning, how much he speaks for her in session); I care about whether he is learning to make new sounds. At home, and out in the world, he is quite a chatterbox—and that includes using the consonants we’re working on in therapy. When the speech therapist puts him on the spot, he clams up, grinning his funny grin. Often he’ll be quiet for 29 minutes of therapy and then burst into conversation on our way out the door. The speech therapist and I have often laughed about this.

So we talked about my reasons for wanting to cut back, and we threw around some other ideas for scheduling—the current schedule doesn’t work at all for us anymore, not with a new year’s lineup of activities for the older girls—and she suggested that we could look at switching to another time with another speech therapist, if her availability didn’t work out for us. We talked about all of that, and none of the options seemed to fit, and so we came back to my preference to cut back to one session a week.

To do that, she said we’d have to set up a meeting with the "whole team" to revise the IEP. The "whole team" means all the school district personnel legally required to sign off on this document. It’s a big slate, in Wonderboy’s case: our speech therapist, the speech pathologist connected with the district’s deaf/hard of hearing preschool program, the preschool teacher, a district rep, an early childhood education rep, the district psychologist, the deaf/HOH itinerant teacher, the district audiologist, oh, and me.

I’m only being a teeny bit snarky in listing myself as an afterthought there. You see, and this is the most significant thing I have to say on the subject of the IEP, the parent is considered "a member of the team." Not the coach, not the person in charge. A member, a single vote.

It is for this reason that a parent must exercise extreme caution in signing an IEP. As I said before, don’t make a mark on that dotted line until you are 100% satisfied with the language in the document.

But I’m jumping ahead of my story. As far as I knew when I walked into that meeting on Tuesday, I was there simply to sign paperwork: the team was assembled to sign off on my request to cut back from two weekly speech therapy sessions to one.

And then, after the introductions around the table—a little low table in the deaf/HOH preschool room, with all ten of us squinched into those tiny little kindergarten chairs—they sandbagged me.

The district rep was leading the meeting. We were there, she explained to the room, because I had requested a reduction in services and the speech therapist had declined the request.

I looked at our speech therapist. (I should give her a name. Let’s call her Pam.) I was shocked. She hadn’t indicated in any way that she was going to recommend against granting my request.

(Do you know how disturbing I find it even to use the words "grant my request"? The very idea of having to ask permission to do what I know to be best for my own child—it’s repugnant.)

Pam looked like she wanted to sink under the table. "I’m so sorry," she said miserably. "I just—I mean, going by Wonderboy specifically, knowing you and how much you work with him, I know he’d be fine, but it’s just—well, a child with his level of need—legally, you understand—I just can’t see how I could justify it on paper, that a child with his level of need could have a reduction in services."

"A child with his level of need"—that’s a key phrase, one which would be used often during the next two hours. It quickly became clear to me that the district personnel were making a distinction between my son and his actual, specific circumstances, and a generic "child with his level of need." Over and over, I was told—not just by the therapist, but by several of the other people on the "team"—that it was clear Wonderboy’s situation is unusual (hearing loss is but one of his many issues; we juggle a boatload of medical appointments; his parents and siblings work with him constantly at home; and so on) and they all had confidence that he "would do fine" with one session a week, but "legally, a child with his level of need…"

Et cetera.

I could make this a very long story. I will probably examine specific points of the discussion in future posts. I think this is an important issue, not only in regard to my family, but in regard to all American homeschoolers—and, indeed, parents in general. We are, as a country, quietly ceding our parental rights to the state.

But I will not cede mine without a fight. In this case, I did eventually bring the "team" round to my point of view. It took two hours of intense discussion. Not heated discussion; no voices were raised. But I had to be frank, and firm, and persistent.

In the beginning, when the district personnel were holding fast to their position, I was told that if I could not agree to stick at the 2 sessions per week, the next step would be to go to mediation, and after that (if we refused to comply with the decision), arbitration. This is California law. As I said in my first IEP post quoted above, in this state, once you sign the IEP, you can’t withdraw your child from services without the consent of the team. I should add "or reduce the level of service" to that sentence.

This post is to be continued. There is lots more to tell (I haven’t gotten to the most outrageous part), and lots to talk about. For now, it’s enough to be able to say that I convinced the team to look at my specific child, not "a child with this level of need." We’ve cut back to one session a week. I’ll continue to work with him every day at home. That’s my job. I’m not a team member. I’m his mother.


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Comments

29 Responses | | Comments Feed

  1. *blinks* Talk about covering sensitive parts of their anatomy at the expense of providing the services that their clients actually need. I can’t believe that their policy seems to be so unyielding that it refuses to take individual circumstances into account! And the idea of the parents not having a veto in this kind of situation is frankly scary… Good luck with it all, and I hope you can continue to avoid being railroaded.

    We have a somewhat similar situation where I live in that the education department has suddenly decided to become more muscular WRT home educators – although at least they don’t have legal powers to force us to conform to their “recommendations”. I’m not normally a fan of the small-government ideology but I could really do with considerably less nannying from our local administration *bangs head on wall*

  2. This is terrible. And one of the reasons why my children are homeschooled. Thank God they don’t have any special needs, I don’t know if I could have been calm during such a two hour meeting.

    Looking forward to hearing the rest of the story. Yikes.

  3. Whoa – I can practically feel your stomach drop when you realized “Pam” was recommending against your request.

    I’m glad that “frank, firm and persistent” worked, but I know that it is also exhausting. It’s frightening to feel that you may not be in control of what is in your child’s best interests.

    It is a challenge to be faced with both needing (and qualifying for!) state services and not being able to substantially influence the “delivery” in a way that will work best for the family – which is ultimately what will work best for Wonderboy.

    And – in the midst of concern about your own child – doesn’t your heart go out to a mom who is less articulate — less able to be “frank, firm and persistent” for a myriad of reasons — but who still knows what will work best for her child, her family? You are among the better-equipped, and yet it took you hours of facing down The Nine – with your persuasive powers and clearly informed parenting.

    The ceding of parental rights is something every homeschooler should worry about. Thank you for allowing your story to remind us. And thank you for fighting for Wonderboy.

  4. My daughter needs speech therapy. She still doesn’t say her G or K sounds and some others. I was going to go the public school route to get her help. After reading this – I just changed my mind!

  5. I would have just burst into tears and called my dad to come up and scold them. You are so tough!

  6. Hugs Lissa!! I have been a member of many in IEP meeting, but from the “other side”. It is one of the reason I never want to go back to speech therapy as a profession!

    IMHO the school systems just don’t *get* the homeschooling mother’s mentality of “I *can* and *will* do this at home because it is part of my job as homeschooling parent” – we saw so many parents (good parents, mind you) who just “left it all up to us” as “professionals” and never really worked with their kids at home. Not that there was much TIME with the kids coming home late from school, two income families and many activities! I know I’m generalizing here, so I hope no public school families are offended. There were some great parents, but many, many hands-off parents, therapy wise.

  7. Most people are fighting FOR services.

  8. Congratulations on winning them over, Lissa! Frankly I think that you could probably talk a cat into swimming across the English channel, but convincing school officials they are wrong is an even greater accomplishment!
    Keep on fighting for your sweet Wonderboy!

  9. this is one of my biggest fears – that we’ll decide later on that it’s not best for our littlest to be in the school system, and that we’ll have to fight to disengage. Our state laws are different, but the underlying principles are the same. But it’s working out so far, and we don’t really have a viable alternative at this point. sigh.

  10. “I” EP… IIIIII
    The whole point is that they are individual. Ugg Thanks for reminding me of something else I don’t miss about PS teaching ; )

  11. I am already outraged for you… and impressed by your perserverance and fortitude in talking them around. Well Done!

  12. I am so sorry you had to go through this. And I need to send a gift to the reading specialist who, after giving NatureGirl an evaluation and speaking with me, advised me to NEVER sign an IEP for her for those very reasons. She instead pointed me to training and books so that I could learn specific models to teach a dyslexic student. She was so confident we could do it better ourselves, and warned that an IEP would be a “life sentence” for her. She stated that each school district gets fives times as much tax dollars for each special needs student in the system, and they will never give that up without a battle. I would love to say it is about their commitment to each students needs, but it is more likely that money is the real root. You are very lucky they agreed even to a reduction.

  13. Oh, Lissa, my stomach sank reading this. I remember your previous post regarding the legally binding nature of the IEP. At that time I shared the post with a couple of local friends whose children need speech therapy: they were very freaked by California’s laws.

    I am so glad for you and yours that (for now? hopefully for good) you have been “allowed” to follow the course that you know is best for your son. I am so sorry that you had to go through this.

  14. I feel for you! We used to live in San Diego and had heinous preschool IEP meetings there for my daughter, who has autism (she’s now 10). They definitely have a one-size-fits all approach. I think it does help after you’ve built a reputation in the meetings for sticking to your guns and knowing what’s best for your child.

    When we moved to L.A., our reputation preceeded us and we had 12 new “team members” gathered in those little chairs!

    I just had to de-lurk and tell you that I think you’re awesome! Well done. (And my girls love your books, by the way….)

  15. I agree with most of what folks have said and wasn’t going to comment but then it’s been rolling around in my head all do so…

    It seems to me that one thing that underlies this is an overly autonomous concept of the individual. I have some issues with this in terms of adults, but in relation to children it is just nuts.

    A child is part of a social network (a household, a wider extended family, a community) and his “needs” cannot be determined in isolation from his place in that social network. In doing so, the “team” have reduced Wonderboy to a biological organism (though even biological organisms are not completely independent of others, but I digress).

    The fact is that the level of his need INCLUDES the level of support he is getting from you, his sisters, his dad, friends, family, other agencies, etc. So even if another family compared their child to Wonderboy in a request for services (and that is the underlying issue with that “legal” issue), they would need to compare the whole story.

    It should be completely possible for them to still work with a notion of an objective need while recognizing the specific circumstances of the child in front of them.

    Of course, my other concern is that by requiring you to do this, it makes it harder for you to go back to 60 minutes a week if, after a couple of months, you determine that he really was doing better with that and that you can make the adjustments. What I don’t understand is why this system is not based on a “this is the limit of what we think he needs and therefore will pay for” and that you can make choices within that.

    And as someone who has always lived somewhere with public healthcare, I am baffled as to why speech therapy is considered an “educational” service in the first place. In the medical field, you have the right to refuse the recommended treatment, even if the state pays for it. And for children, the issue then becomes one of whether your decision amounts to neglect. But the criteria a court would use to make your child a ward so they could receive treatment would be much more constrained.

    I’ll stop now. It is a good thing you are articulate and confident. And I’m glad you got what you wanted (though without the flexibility to be convinced you were mistaken; not that you are).

  16. My son had a great experience having speech therapy through the public schools. I just wanted to mention that!

  17. Wow, I knew the system was really strict here but I would have assumed that the parent would always have the final say in any matter relating to their child. Learning this makes me feel even better about my decision to homeschool my son before “they” decided to put him into the special needs group. Way to go for sticking to your guns and getting what you wanted out of the system. You really are my hero.

  18. Hey Melissa,
    Good for you in standing your ground! It is a wonderful thing that you are getting the word out on the legally binding nature of an IEP.
    I hope to one day in the future make a “cliffnotes” type fact sheet, for moms to arm themselves with, of Indiv. with Disabilities Act laws to know by heart. Moms need to be able to go in to those meetings and say, “According to the I.D.E.A. Section yadda yadda, you must yadda yadda.”
    I had a wonderful friend tell me EXACTLY what to say when I went through it with Little Man.
    So, anyway, I’ll put that on my list of things to do….
    Number 7,81,783! ~sighs~
    love & blessings to you and Wonderboy.

  19. “We are, as a country, quietly ceding our parental rights to the state.

    “But I will not cede mine without a fight. In this case, I did eventually bring the ‘team’ round to my point of view.”

    I wouldn’t expect anything less of you, Lissa :).

    And you’re right about ceding rights. In most cases, it seems, parents are happy to hand over their rights as they kick their kids out of the vehicle to the curb on the first day of junior kindergarten. Rights are seen to be just as pesky as responsibilities, it seems. And that point of view has become so common that those of us who refuse to cede those rights start looking like the nutty ones. We are the difficult ones in that “it takes a village” scenario…

    When our eldest was in first grade and ahead of her class, the principal suggested some sort of program, similar to an IEP, for extra work along the lines of gifted and talented. Aside from the fact that I didn’t think she was g&t (just six years old and bright and motivated), it would have involved some sort of blue-sky session, the technical name for which I’ve long forgotten, that from all my research seemed to be used only with including in the classroom the profoundly mentally disabled; it would have involved a host of experts, including a special “facilitator” from the big city. I was stunned that our little local rural school had to handle our situation — a bright little first grader who was ready for second grade — as a school “system” in the “approved” method, which was beyond overkill.

  20. So many things here I want to respond to! Thanks, all of you, for contributing to the discussion.

    Jeanne wrote, “And – in the midst of concern about your own child – doesn’t your heart go out to a mom who is less articulate — less able to be “frank, firm and persistent” for a myriad of reasons — but who still knows what will work best for her child, her family? You are among the better-equipped, and yet it took you hours of facing down The Nine – with your persuasive powers and clearly informed parenting.”

    Jeanne, that is a thought that kept returning to me following the meeting. I knew I’d done a “good job”–but it troubled me that I had to, that I had to be so persuasive and, as you said, articulate. You shouldn’t have to be a good debater to get what’s best for your child. I know many mothers who are milder-mannered than I, not so mouthy, but they’re every bit as shrewd about their children’s needs as I am. I’m just lucky this is an area where you accomplish things with words and not, say, organizational skills.

  21. What is enough to make you paranoid about the IEP process is the fact that while you are “legally” an important team member, the actuality is that the rest of the baseball team works together and obviously comes to a ‘rest of the team’ agreement before you, the parent, ever walk into the room and set your birthing hips into one of those ittie-bittie chairs. To me: a team is never about 8 against 1…

    I know *so* many people, though, who are desperate to get their children an IEP, but who are blocked by the school district every step of the way. I think it’s important to mention that for public-schooled children who don’t, for whatever reason, have the choice of home schooling, that IEP (and gaining access to the legal protections and services it delivers) can make or break their entire educational experience because it modifies and re-shapes what is otherwise a very unforgiving, ‘one size fits all’ bureacracy.

  22. JoVE wrote:
    It seems to me that one thing that underlies this is an overly autonomous concept of the individual. I have some issues with this in terms of adults, but in relation to children it is just nuts.

    A child is part of a social network (a household, a wider extended family, a community) and his “needs” cannot be determined in isolation from his place in that social network. In doing so, the “team” have reduced Wonderboy to a biological organism (though even biological organisms are not completely independent of others, but I digress).

    The fact is that the level of his need INCLUDES the level of support he is getting from you, his sisters, his dad, friends, family, other agencies, etc. So even if another family compared their child to Wonderboy in a request for services (and that is the underlying issue with that “legal” issue), they would need to compare the whole story.

    Yes, yes, yes! Exactly. That’s what frustrated me so much in hearing person after person on the “team” say they wouldn’t have a problem making the recommendation for Wonderboy specifically, but were hesitant to do it because of how it would appear on paper.

    And I’m glad you got what you wanted (though without the flexibility to be convinced you were mistaken; not that you are).

    If I’m understanding correctly, you’re saying that perhaps I was unwilling to believe I was wrong about how much therapy he needs? While I’m as prone to mistakes and misconceptions as the next person, in this case I am confident I’m right. In the next post, I’ve gone into more detail about the alternate solutions we discussed during the meeting (and actually there is still a lot of stuff I haven’t talked about in a post–I’ve been so wordy as it is!). I was open to other possibilities, but they couldn’t offer anything that made sense.

    But that openness was a concession to the thorny legal issue, not out of a sense that I’m wrong about the level of service he needs. The reality is, week after week I sit in those sessions wondering why we’re there at all. The therapist not do anything I can’t (and don’t) do myself at home. She has more toys at her disposal, but all of her activities are easy to replicate at home.

    I have to wonder if, like Angela, I couldn’t find resources for educating myself in speech therapy techniques and meet with just as much success as we’ve had with the sessions.

    Another thing! I meant to write this in one of the posts–it’s really kind of funny, in a way. The district rep kept saying Pam was concerned about not making enough progress if she only sees him “four times a month.” The 4x/month thing was repeated numerous times. It didn’t occur to me until later to point out that he made wonderful progress over the summer–when Pam didn’t see him for 3 months! And the district has a two-week fall vacation in October. Even if we had stuck with the 2x/week, Pam would only be seeing him 4 times that month.

    The most unbelievable suggestion came near the end of the meeting, when everyone had agreed out loud that Wonderboy would “probably be fine” with a reduction of service, but the district rep and Pam were still uncomfortable about committing it to paper. The district rep–I really can’t believe this–said, “You know, you could always just call him in sick once a week…”

    I pointed out a few serious concerns with that plan. Such as: it’s LYING. Hello. And that it would seem to put Pam in a compromising position, wouldn’t you think? Falsifying paperwork week after week, since she would know I was LYING? Not to mention I have to think it would create an appearance of neglect on the part of the mother, a paper trail that could have serious ramifications. Oh, and also? It’s LYING.

    I couldn’t believe she suggested such a thing.

  23. FYI, under IDEA 2004 and FAPE laws, by signing the IEP you are NOT agreeing to it! That is a common misconception, even among school staff. You are signing that you showed up while it was being discussed. You can call a new IEP any time you wish, not just once a year. If they keep screwing it up and you are not happy, call, call again. I know it’s a pain but eventually they will get tired of multiple meetings and probably give in. Been there, sista.

  24. Good for you, Lissa! I won’t go into how outraged I am on your behalf–everyone else has done so very well. Big hugs to you.

  25. I’m not a team member. I’m his mother.]]

    Wow….you gave me chills with that.
    We are ‘slowly’ ceding our parental rights’. I think in a very small way you won one for our team tho’ Missy…and I’m proud of you.

    I’m busy reading the ‘rest of the story’ now.

    God bless Wonderboy! God bless his SUPER mom!
    mary mi
    toc

  26. I meant ‘Lissa’…not ‘Missy’…my bad.
    Sorry!
    You know what I mean tho’.

    I probably should give her a call.
    ;p
    love mary mi
    toc

  27. Incredible and well done my dear!! Applaud resounding…..

  28. […] a lot about navigating the IEP process, and some of the lessons came at a price. (You may recall the one IEP meeting where I was sandbagged by “the team” and had to fight hard to persuade them to agree to what I knew to be the […]

  29. […] where I second-guess it. Navigating the system, dealing with an IEP—not to mention the IEP team—hasn’t always been easy. But most of the time I think it was the best choice, bearing in mind that no alternative is […]