Monday, January 26, 2009

First Meeting Heebie Jeebies

So our first meeting with the school district was interesting.

I say interesting because I'm not quite sure what to think of how things went, and I don't want to get too pessimistic before we've met any of the team we'll be working with. Basically we sat down with a coordinator, outlined the things that we wanted to do, set up an meeting for an evaluation, and then signed a piece of paper that said we'd been warm bodies in a room.

The coordinator was very, very nice, but I still came out of the meeting with a sinking feeling. We've outlined two very specific items that we want to walk out of Connor's IEP with and absolutely will not take no for an answer. We've thought about these items for quite some time. We've discussed them with his therapists, special education teacher, and doctor and they all agree with us that we are not asking for unreasonable things and have very, very good reasons for wanting them. They are:

1) Connor needs to be in a Deaf and Hard of Hearing classroom. Ideally we'd like to split his time-- two days a week in the Deaf and HOH classroom, and two days out of the week in the Developmental classroom, but if we have to choose one, we'll choose the Deaf and HoH. Connor has to continue to acquire language, and he needs to do it in an environment where his peers all sign, even if they are learning things a little bit out of his range. We can supplement with physical and speech therapy outside the classroom if necessary, but he can't spend four days out of the week in a classroom where he doesn't understand what everyone is saying.

2) Connor needs to be assigned an aide. We'd ideally like this aide, preferably a nurse aide, to go to SEE classes and learn how to sign. Since he uses a wheelchair that he cannot direct himself, needs help going to the restroom, cannot feed himself, is visually impaired, will have a g-tube, and is at risk for seizures in which he stops breathing, heart failure, and stroke, we feel that someone who is there to help Connor is not too much to ask.

Once we had outlined what we wanted for Connor, the coordinator, who as I said was very nice, began speaking gently to us about "least restrictive environment." She said that having an aide would be the highest level of restrictive environment, and they need to start with the fewest restrictions and work up from there.

After having said this, she then told me that there were only two schools who had an RN and LPN on staff, and the Deaf and HoH preschool was not one of them. Because of Connor's potentially life-threatening issues she believed it would be best for him to go to the one that was only five minutes away from the hospital.

So essentially what she was telling me is that in her opinion, it would be best if Connor went just to the Developmental preschool without an aide.

Now, I have a few problems with this. Okay, I have a lot of problems with this, but I'll just outline the ones that center around the logic she was using to justify this opinion. In my understanding, the concept of least restrictive environment centers around the idea that a child be as included as possible with other children who do not have special needs. Now while the Deaf and HoH classroom does contain mostly children who are Deaf or HoH, it also contains children who are CODAs (Children of Deaf Adults) or have siblings who are Deaf. If Connor can participate in a classroom with typical children provided he has an aide, I would think that this would be a less restrictive environment than putting him in a classroom of only special needs children without an aid and, I might add, without any form of communication.

I would be able to understand the logic behind him needing to be at the school only five minutes away from the hospital if I didn't already know that the Deaf and HoH preschool is only seven minutes away from the exact same hospital.

I didn't go into any of my reasons why I was not happy with the initially expressed opinion at this meeting. I know that the coordinator doesn't actually have any say in what happens to my child at this stage in the game, though she might later as she is also a child psychologist and could potentially be on the evaluation team. I didn't want to get angry and start things off on the wrong foot right from the beginning-- I'd much rather have a great, mutually respectful partnership with the school, so I won't dig my heels in until we get to the meeting where it matters. They might be completely in agreement with me and immediately give us everything we are asking for. That being said, I absolutely will not take no for an answer on these two requests, and I can be very, very stubborn when I need to be.

We'll just have to see. It's just that this seems to me like a warning we may have a fight on our hands.



Anonymous said...

While LRE (Least Restrictive Environment) may mean being educated in a classroom with non-disabled peers for the majority of students with a disability, for a deaf child who depends on sign, this could be argued as a MORE restrictive environment as the child cannot communicate one on one with his or her peers. So, for Conner, his LRE would be the DHH program. Also, an aide has NOTHING to do with the designation of LRE. In fact, a child with an aide in a regular education classroom is considered LESS restrictive than a special education placement because LRE applies to PEERS not to the adults in the room. - "The team must consider the range of supplementary aids and services, in light of the student's abilities and needs, that would facilitate the student's placement in the regular educational environment"

in other words - what does the child need to be in the regular education classroom? An aide would be one thing. For a child who can communicate with his peers, the regular education classroom, WITH AN AIDE, would be the LRE. The special education classroom would not. - "While determinations of what supplementary aids and services are appropriate for a particular student must be made on an individual basis, some supplementary aids and services that educators have used successfully include modifications to the regular class curriculum, assistance of an itinerant teacher with special education training, special education training for the regular teacher, use of computer-assisted devices, provision of notetakers, and use of a resource room, to mention a few."

This does not specifically include an aide, but it includes a notetaker, a person, someone to help a child, therefore I am pretty sure an aide could not be excluded.

Good luck and if you go in there quoting the relevant IDEA parts, e.g. ""statement of the specific special education and related services to be provided to the child and the extent that the child will be able to participate in regular educational programs." 34 CFR §300.346 (a) (3)", then you should be able to show them that you know what you are talking about. Also, if they say that they don't do something in that school district, ask them for a copy of the written law. Most schools have difficulty finding those : )

If you have a local Hands and Voices chapter in your area, they frequently have parent advocates who can go to a meeting with you and help you stay on track for what Connor needs.

OM (parent of deaf child).

Connor's Mom said...

Thanks! We do have a Hands and Voices chapter in the area, and we've been to a few of their lectures and events in the past. We use Family Conversations, the local SEE birth-to-three program, for most of our Deaf and HoH services right now. We'll be bringing in the big guns for Connor's actual IEP meeting-- currently the list of people we want in the room includes his Family Conversations therapist, his Deaf mentor (with an interpreter), his special education teacher, physical therapist, speech therapist, and Family Resource Coordinator. All of these people are on the same page as Jer and I are in regards to what we want for Connor, and all of them have a heck of a lot more experience dealing with the school district than I do. I figure it will be a whole lot harder to tell seven of us "no" than it will be to tell just one.

I think that going in there with the law in hand is a fantastic idea, and I'll add it to my list of things to bring with me. My job is to make it much, much more of a hassle for the school to not give us what we want then for them to just capitulate and do it.


Tanna's Triplets said...

I will keep you all in my prayer!!

Julia said...

Do you belong to the Listen Up Yahoo group? (Parents of d/hoh kids...) There's a lot of discussion of IEPs there, and I'm sure you'd get great tips on what sort of battle you're facing and how to prepare for it. There's also a lawyer who checks in regularly and gives great advice and can quote the law chapter and verse. (Just ask for John Flanders in your subject line.)

Hetha said...

Hi Jess! So nice to "meet" you and get to know Connor through you.

I've written an appeal letter to a district that refused to send Ethan to a deaf program and I link to it on Ethan's World. You might find some useful language to borrow for your upcoming interactions with the school.

My experience with 3 different districts is that the psychologist has played a BIG role in the meetings and the decision making. They are sort of the liason between the IEP team members and the parent but they also are considered to be part of the admin. team at the school and are definitely coming to the table with intentions to get away with spending as little dollars as possible. Maybe it's different in your state, but that has been my experience here in Ohio.

I think going into that meetings with your team assembled to back you up is really wise and it will definitely help. If you can, I'd look for an advocate who is trained in special ed law to take with you as well. I've found that the team members (therapists who work with our kids, etc.) usually are only going to discuss the specifics of their most recent evaluation and they aren't necessarily well versed in the language that gets tossed around in these meetings. I agree with what anon. said about LRE. For a child like Connor, being in a room where he is unable to understand what is being said and unable to directly access language with teacher and peers is highly restrictive.

We've been unsuccessful at obtaining an aide for Ethan, but it sounds like you are armed with many justified reasons for needing an aide for Connor and I'd be surprised if they tried to fight you on this.

As my friend KC says "May the Fierce Be With You"!

Take care!

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