Finn’s Transition to School District – Part III


In the interest of advocacy, and hopefully reaching other parents dealing with similar situations, I’d like to share our experience openly and honestly.  If you are just now tuning in, the earlier parts of the process of transitioning Finn from Early Start services, which covers ages 0 – 3, to School District services, which typically begins immediately at age 3 for children eligible for services (in Finn’s case, Down syndrome is the diagnosis that qualifies him for services) can be found here:

Transition Meeting

Assessments, Round 2

Following up the second round of assessments, Michael and I drafted the following letter to the Preschool Assessments Coordinator for the school district, with a cc to our Regional Center service coordinator, and mailed it on June 12:

***

Dear ______:

We are writing to document our request to receive, at least one week prior to our son’s scheduled IEP meeting on June 28, drafts of any and all evaluation/assessment reports before they are finalized.  As we are sure you know, this process is overwhelming for parents, and we need time to analyze the results and determine whether they appear to be a fair and accurate portrayal of Finnian’s abilities, or whether it is necessary to request an independent evaluation. 

We would also like to bring to your attention and have you address some concerns pertaining to Finnian’s transition from the Early Start program through the Regional Center to the school district.

First, we and Finnian have been rushed through this process in a manner inconsistent with the Individuals with Disabilities Education Act (IDEA).  We expected, and were given the impression, we would have an initial transition meeting well ahead of the evaluation process and IEP; and that we would be sent the District’s proposed evaluation plan so that we could review and understand it, and investigate whether the evaluations proposed were appropriate, as well as learn who would be the evaluators and their credentials.  Second, we expected that the evaluations would be administered in a manner that would at least appear designed to accurately reflect Finnian’s abilities.  As explained below, we are concerned the District may not be meeting its obligations under the IDEA with regard to these issues:  

We received a letter from our Regional Center service coordinator, __________, dated January 31, 2011 stating that the transition process from Early Start to the school district had begun.  In that letter, Ms. _______ informed us that a transition meeting with the school district would take place in April.  However, April came and went with no word of a transition meeting being scheduled, so we contacted Ms. _________ by email on May 4 requesting a status.  She responded by phone shortly thereafter and said she was still trying to coordinate a transition meeting with the school district and did not yet have any potential dates.  It wasn’t until mid-May that we finally received a call from your office to schedule three meetings: the Transition Meeting, Assessments, and IEP.  Given that Finnian’s third birthday is on July 7, time was clearly running short, and we were offered very little flexibility in the scheduling of these meetings; basically, we were told these were the three dates available (June 3, June 8 and June 28), period, with no alternatives.

Based on information given us by Ms. ________, we were under the impression that the transition meeting would be an opportunity to meet everyone on “the team,” discuss the transition process and possible assessments that would take place, and work together to come up with a transition plan, and discuss any concerns we had.  Instead, we arrived on June 3 and were faced by a table full of people, had a consent form placed in front of us and were expected to read, understand, and give consent for multiple assessments of our son on the spot, and then go forward with said assessments right then and there.  We were quite taken aback by how this was handled; we still do not understand why the consent form and descriptions of possible assessments couldn’t have been sent to us prior to the meeting so that we could have had an opportunity to give it some meaningful thought; we were told simply that it is not your policy to do so.  As you know, we had to ask for a few minutes of privacy to discuss the consent form and ended up declining the majority of the assessments proposed for Finnian.

Directly after signing the amended consent form, your team began the assessment process, conducting multiple direct assessments of Finnian simultaneously.  When I (Finnian’s mother) returned with Finnian on June 8, it was the same: you, the SLP and two occupational therapists proceeded to conduct assessments of Finnian simultaneously, intermingled with two or more of you asking me questions about Finnian simultaneously for purposes of written questionnaires.  It was extremely stressful, to say the least, and not fair to Finnian at all.  How any young child can be expected to “perform” in a strange setting, with multiple strange people all at once is difficult to fathom.

We therefore feel we have been rushed through the process and are concerned, based on time limitations and the manner in which the assessments have taken place, that the assessments might not yield a completely accurate picture of Finnian, and if this is the case, it will be difficult to construct a meaningful IEP for him.

We look forward to receiving the draft evaluation reports and proposed IEP as early as possible, but no later than one week before the scheduled IEP meeting of June 28.  Thanks.

Sincerely,

Lisa and Michael Morguess

***

Just yesterday (ten days after our letter was sent, and the day on which we had requested to have the assessment reports in hand), we received voice mail messages from both our RC service coordinator and a different person from the school district – not the person our letter was addressed to (who was present at the Transition Meeting/Assessments), and not a person we’ve ever met or spoken to before.  I didn’t even bother calling our service coordinator back; there doesn’t seem to be much point, as I imagine this is all pretty much out of her hands at this point with Finn’s third birthday looming in just a couple of weeks.  We did copy her with the letter, mostly for purposes of making sure Finn’s file is fully documented.

I did return the other person’s call this morning.  She identified herself as the Director of Assessments.  So, it appears that we’ve now added another person to the process.  She informed me that the purpose of her call was to let us know that she would be sending a letter to us addressing the concerns we outlined in our letter, and to let us know that they will not, in fact, have the assessment reports to us until the end of the week (she said they will go out in the mail Thursday, which means we wouldn’t receive them until Friday at the soonest, and Finn’s IEP meeting is scheduled for Tuesday, and we will be out of town this weekend).

I’m really irked by this.  We stated at the very first meeting on June 3 that we wanted the assessment reports in hand by one week prior to the scheduled IEP meeting.  “The team” agreed to make this happen (we did get the sense, however, when we requested draft assessment reports prior to the IEP meeting, that this is not their typical protocol; I got the distinct impression that they usually do not send the parents draft assessment reports prior to the IEPs at all, and just expect everyone to deal with all of it on the spot at the IEP meeting).  We reiterated this request in our letter.  It’s not that we’re trying to be pains in the ass – we truly do want to have time to go over the reports, understand them, request modifications we might feel are warranted, and/or, worst-case scenario, arrange for independent evaluations of Finn (which is within our rights).  One week was by no means an unreasonable request to accomplish what we, as Finn’s parents, need to accomplish on his behalf.  I understand that the school district is dealing with its own over-burdened, understaffed, under-funded system, but where does that leave us, the parents, and the children who are supposed to be helped and educated by the system?

What upsets me most of all, though, is that it doesn’t seem to me like they’re even trying to pretend that we’re all on the same side here, attempting to work together for Finn’s best interests.  The whole thing spiraled down into an adversarial us vs. them from the first few minutes of that first meeting a few weeks ago, and I have such a bad taste in my mouth about the whole thing at this point that I would love to just wash my (our) hands of it.  How am I supposed to feel good about putting my son in the hands of a system that clearly doesn’t give a shit about him?

Anyway, I told Ms. Director of Assessments that, since they cannot get the reports to us until the end of the week (if that), that we will not be attending the IEP meeting scheduled for Tuesday, and it needs to be rescheduled.  She said that she will send a letter to us to reschedule the IEP.

Looks like Finn’s file is going to be growing very fat.

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11 Comments on “Finn’s Transition to School District – Part III”

  1. esther
    June 22, 2011 at 11:01 pm #

    lisa, it almost seems as if though the system is trying to group all children with down syndrome into one group..one group only and already predetermined that “that group” will be doing this and that when turning 3, or whatever the age, in school. It seems that it’s simply not designed to really look at each and every child in a unique manner. It does not WANT to truly evaluate the child in his/her abilities and milestones.

    This would upset me, too. As a mother of two kids the same age as Finnian, this would upset me, too.

    I am sure that there are as many differences among children with DS as there are among children not born with DS. We are all different Heck, you have twins, too: aren’t your girlie twins different in many ways, too? My boys are “night and day” in most things, even though they were born just 2 minutes apart. They reached certain milestones at different times, often as much as 3 months apart from each other. And so the assessments and evaluations should be done properly and WITH RESPECT to the child and parent/s involved.

    I am done venting on your part! Better go make dinner…Hugs, Esther

    • Lisa
      June 23, 2011 at 12:22 am #

      Esther, yes, that’s exactly how it appears to me – one-size fits all. Early Intervention in our neck of the woods was much the same.

      And yes, my twins are VERY different from each other – as are all kids.

  2. Lisa
    June 22, 2011 at 11:10 pm #

    Sounds like they were cutting it close with the reports. Technically, they have to give them 5 days before (if a parent requests in writing), which they would barely accomplish by the skin of their teeth. So, good for you requesting a new date… totally within your rights (as you know). More importantly, I think the letter was good… clearly lays out your concerns, ties it to the regulations they are bound to, etc.

    The one thing I find puzzling (this is from your linked “Assessments Round 2″ post) is the special ed teacher’s comment that they “are having some trouble coming up with an appropriate recommendation since we have declined so many of the assessments they wanted to do.” That’s bullshit… you agreed to OT, speech, academic/pre-academic skills. If done properly (which it sounds like they weren’t given the 4:1 eval ratio – ridiculous!) those assessments (with the teacher, SLP, and 2 OTs involved) would paint a clear picture of school placement and supports. The intellectual development, psycho-motor, health, self-help, and social/emotional would not yield any information that was functionally different. I just wrote about this issue over on my blog last night… bottom line, the assessments you declined would not alter any recommendation.

    And by the way, that’s a shitty pressure tactic to use in the middle of an assessment. Sorry. Hugs.

  3. Lisa
    June 22, 2011 at 11:37 pm #

    I meant to add: if you and Michael have decided firmly to NOT ask for school placement, then the teacher’s comment doesn’t matter – because you don’t need a placement. If, however, you ARE interested in advocating for a good placement (and then you can decline later or withdraw him if you don’t like it) you can certainly fight for that placement based on the assessments you do have (if you deem them to be accurate).

    If you ever want support at your IEP, just say the word. If I can make it work, I’m happy to be your notetaker and support person… even help you advocate if that’s what you want. Seriously. I would do it in a heartbeat. But it’ll cost you lunch or dinner with the your family ;-)

    • Lisa
      June 23, 2011 at 12:27 am #

      Lisa, the truth is, I am still very torn about preschool placement. I just don’t feel like I can make a decision until I see what they offer us. Ideally, I’d like to see him in a “typical” preschool, but I’m leaning heavily towards waiting another year for that. I kind of feel like at this point, the only way I’d enroll him in any type of preschool is if they offered something we felt really, really good about.

      You have no idea how much your offer means to me. I was and still am so grateful to you for all your input and guidance during the transitional meeting, and ever since then I’ve been thinking that you are such an amazing advocate, your services would be invaluable to so many families. You really should think about taking on advocacy in an official capacity. Anyway, I will let you know when the IEP gets rescheduled to and, yes, if you were available by phone or something, that would be so wonderful. Thanks a million, my friend.

  4. Keri
    June 23, 2011 at 12:25 am #

    Good for you! Finn is very lucky to have such an ardent support system in his corner. That, more than anything, will make a huge difference in his education!

  5. tiny
    June 23, 2011 at 1:03 am #

    Did you send your other kids to preschool at this age?
    Is early ed really something you were interested in before? or just something you feel like you “should do” ?

    • Lisa
      June 23, 2011 at 4:23 am #

      Excellent questions, Mireille. No, I did not send my other kids to school at this age. Well, the twins, yes, I did send them to a little church (gasp!) non-academic preschool at age 3, but only because I was tearing my hair out with them and needed a break, not because I felt they needed preschool at that age. My other kids I didn’t send to preschool (really pre-k) until they were 4, a year before kinder. I’ve never been one to feel in a rush to get my kids off to school. I’ve always felt like, let them be little for as long as they can – once they start school, that’s it until into adulthood. And there is definitely a part of me that would like to follow suit with Finn. We do tend to go against the grain with respect to the Down syndrome parenting community. We already opted out of Early Intervention a long time ago. I am torn about preschool at this age for Finn. Do I feel it’s something I should do? Not exactly, but there certainly is a lot of pressure from the powers that be and from peer parents to do everything we can to help our kids “reach their potential.” Part of me thinks it’s at least partly a myth, just something we parents can cling to to feel like we can have some power over the outcome of our children’s lives, which is a powerful motivator seeing that most of us were shocked by our kids’ diagnosis and with that comes a feeling of powerlessness. I don’t know how much I believe early intervention really “helps” or changes any outcomes. Sometimes I think it’s all bullshit – and that an entire industry has sprung from “helping” kids with disabilities – and that these kids, just like any other kids, will achieve and learn things in their own time. But yeah, then to watch your kid hit a developmental plateau that sometimes seems to last a loooong time, then you start thinking, well, maybe some intervention would be helpful. I’ve swung back and forth on that almost since Finn was born. As for preschool, I’m torn. Heavily leaning against NOT sending him to preschool for at least another year unless we are offered something phenomenal. But, of course, putting preschool off is met with horror and disdain from a lot of corners, and it gets a parent second-guessing herself.

      • tiny
        June 23, 2011 at 5:27 am #

        Yup, it seems like it’s a lot of pressure to push the kid at an early age (early intervention). Seems counter to the needs of the kiddo in a way, if he takes longer to do things, why push it? Maybe he’s not ready. He’s only 3! Crap! How do you think he’d do being away from you for (how long is preschool anyway? I don’t know cause I didn’t do it either) Parenthood is all about second guessing. sigh.

        ps as always an awesome letter :)

  6. JJ
    July 9, 2011 at 3:16 pm #

    You can always attend the IEP meetings to gather the reports/information and NOT sign then. You can take the reports home for review before signing anything. The IEP meeting is to discuss results. All reports are DRAFTS when presented in an IEP.

Trackbacks/Pingbacks

  1. Finn’s Transition to School District – Part IV | Life As I Know It - July 1, 2011

    [...] District – Part IV Posted on July 1, 2011 by Lisa When last I updated, we had sent a letter to the school district outlining a number of concerns we had regarding the manner in which the school district conducted [...]

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