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Key words: Information, Deafness Related Issues, Deaf Education

Document 1 of 25

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Date: Tue, 18 Jun 1996 15:59:08 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: CSE again

To: Multiple recipients of list EDUDEAF

Sorry to bring up this issue again, especially since most of you have vacation already. Here some facts about our CSE meeting that dealt with bringing a profoundly hearing impaired child from BOCES back to district, mainstreamed into first grade.

-Since speech therapy is provided (5 times per week), itinerate services will not be necessary or minimal.

-If the speech teacher in the district is not qualified and a qualified teacher is needed, the child has to stay at BOCES since qualified teachers are available there.

-In service training (means the teachers and staff get some training about hearing impairment and -equipment) will be provided once per month but not before school starts in September.

-No speech provided during the summer.

-Closed captioned TV not provided.

-Noise reduction in the classroom by putting rubber tips on the chairs and tables: not provided, since BOCES does not have this kind of modification.

-No observation of the possible classroom teachers by a qualified teacher of the deaf.

-FM trainer not provided.

We have had a number of recommendations from BOCES and the NY League for the hard of hearing, AG Bell and American Association for Deaf Children, but none of those recommendations we were able to put in the IEP. Overall it was not a discussion or agreement. We were told we do not have to agree, if we are not happy with these offers, the child is welcomed to stay at BOCES.

Any ideas on how to get things moving? Guess I just need to sob a little bit in writing.....Buaaah...

You could write me in person without bothering the whole list. Thanks, Birgit

birgit@asterix.bio.sunysb.edu

Document 2 of 25

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Date: Wed, 19 Jun 1996 19:50:47 -0500

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: DeLores

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Since my deaf kids are raised now and I have more time to think about "things", I think that even though there is a certain amount of regression during the summer months it is offset by the opportunity for the child to have more unstructured time to imagine and entertain himself and just have fun without the pressures of being constantly shuttled someplace to "learn" in a classroom or with a group. My kids tell me they learned more from our travels than they ever learned in the classroom. Of course, during our travels we were constantly teaching them new words for things, reading signs, experiencing and feeling and doing new things. There was no concrete way to teach many words or signs until they experienced the Great Plains or the Rockies or their first oil well or Mickey Mouse in person or crossing the border from one state to another or from one country to another!

I remember when my son left home for college and drove from the West Coast to New York alone staying in motels, eating in restaurants, dealing with car problems, etc. Friends with deaf children the same age were terrified that he wouldn't be able to handle all these things alone. We knew he could because we had taught him these things as we did them ourselves. Other deaf kids had never been allowed to experience the process of deciding when and how much of a tip to leave, for example, or how to get the best deal in a hotel or motel etc. My deaf daughter went to Germany in high school as an exchange student. These are learning opportunities that parents need to provide for their deaf children and that the schools are not equipped to handle.

Know the law and use it if you have to, but by all means avoid a hearing or even mediation if at all possible. If you show up and make it clear that you know the law, specifically how it pertains to your child's needs, there is little chance that you'll need to take such a drastic and final move such as mediation or hearing.

That depends on the district. I will never forget the superintendent of schools who told me there were no deaf children in our town!!

Requesting a due process is a do it yourself thing and very simple. Once a hearing has been requested you can then request mediation. Most districts will not do the mediation unless a hearing has been formally requested first. Certainly, it is great to use all of your skills in negotiating a compromise but at a certain point you must be PREPARED to request a hearing in order to get on with the process of your child's education. Having done it all from all different directions three times I can tell you that if I had not requested a hearing in order to get an appropriate evaluation (much less an appropriate IEP or placement!) my children would not have the education they have today. My first hearing was against the Oregon State School for the Deaf and our local district. In the middle of it I fired our attorney and took over myself. We won.

DeLores Wilson
dhag@mtsi.com

Document 3 of 25

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Date: Wed, 19 Jun 1996 09:46:26 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: John & Robin Henne

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Like Delores Wilson, I wonder why (or if) parents aren't looking at going to mediation or a due-process hearing. As inappropriate as the arguments listed sound, if parents are convinced to go along with them, there's not much anyone else can do. I assume you and other professionals involved have shared information with parents about their rights in all of this and exactly what those rights mean. Sometimes I know parents are really intimidated by professionals, by all the paperwork, and generally by the system - does New York state have any form of parent advocate group to work with them and attend meeting with them?

Robin

Document 4 of 25

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Date: Wed, 19 Jun 1996 08:01:36 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Before we go to a due process hearing or an impartial hearing, we like to mediate and discuss things in peace. We think, it does not help to annoy the district. At this point, we are not sure what they will have to provide. We thought noise reduction and FM system should be provided. It is true that the child initially will be mainstreamed for only half the day and will be in the special ed class for the other half. Mainstreaming will be increased to full mainstreaming through the course of the year. However, she will need assistance in the mainstream class. We also thought it was our right to choose the school (which is our district school) rather than having the district deciding over the placement.

Thanks for the info about the advocacy board.

BOCES stands for Board of Cooperative Educational Services. CSE (Committee on Special Education) meetings are held at least once a year with the district representative, psychologist, parents, school representative, and parent member to discuss and decide over the Individualized Education Plan (IEP) as well as the best placement for the child.

Thank you all for advice.

Birgit

Document 5 of 25

Information Home PageDocument: 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Date: Wed, 19 Jun 1996 15:26:55 EDT

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Cathy Brandt

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

In-Reply-To: Message of Tue, 18 Jun 1996 15:59:08 -0400 from

On Tue, 18 Jun 1996 15:59:08 -0400 Birgit Woelker said:

>-Since speech therapy is provided (5 times per week), itinerate services will not be necessary or minimal.

For what purpose did he need an itinerate. If it wasn't for speech purposes he may still need that person. Just because you have a foot doctor doesn't mean you don't need a hand doctor. (Please don't anyone go off on me about using a MEDICAL analogy)

>-If the speech teacher in the district is not qualified and a qualified teacher is needed, the child has to stay at BOCES since qualified teachers are available there.

That is AGAINST the law. The child has a right to be educated in his neighborhood school. That district must provide for him what he needs.

>-In service training (means the teachers and staff get some training about hearing impairment and -equipment) will be provided once per month but not before school starts in September.

Informal chats and a MINIMAL amount of paperwork (brochure, one or two page Hint Sheet) are often more effective at the very beginning - even asking to stop by their room and chat with them someday for a bit.

>-No speech provided during the summer.

You should have extended school year services there. If the kid QUALIFIES for it the district is REQUIRED BY LAW to provide it if the parents want it.

>-Closed captioned TV not provided.

How much do the kids watch tv? For what purposes? If this is a MAJOR thing for the child then continue to attempt to acquire one SOMEHOW from SOMEWHERE. But, if it isn't a big deal then I'd let it slide until it does become an important part of an instructional part of the day. 5 and 6 year olds in mainstream do a lot with records, tapes and songs, too. There's no way to make those accessible except by handing the kid a copy of the words. If he is a non-reader that may be of little benefit.

>-Noise reduction in the classroom by putting rubber tips on the chairs and tables: not provided, since BOCES does not have this kind of modification.

It DOESN'T MATTER IF THEY ****HAVE***** it. Lack of finances is NEVER a reason or an excuse for non compliance. (Can you tell I just had dinner with someone from the KY dept of ed who does our state wide audits)

>-No observation of the possible classroom teachers by a qualified teacher of the deaf.

That's a STICKY issue. Teachers observing teachers is bad news in my opinion if it is for the purpose of offering feedback, suggesting changes or informing the other of "how to teach" a child who is deaf. I'd definitely bring in someone else. I think a QUALITY IEP and regular monitoring of this will provide the feedback on how the child is progressing. Parents can always observe in the classroom and ask questions or make suggestions. Parents are A MAJOR KEY here.

>-FM trainer not provided.

If his IEP stated he needs one IT IS THE LAW that he have one!!!!!!!!!!!!!!

My question here is WHAT does the IEP say? We can not determine placement of a child until we determine what his/her strengths and weaknesses are. What are the areas of needed development? What are your short term and long term goals for the child. At what level is he functioning? What are his most pressing or immediate needs - both behaviorally and academically not to mention socially.

Once those questions are answered and you know what the child needs to continue developing at a reasonable rate you will be able to determine which setting is most appropriate. If the parents then disagree or don't care that one placement is actually better qualified to provide an education for the child they are free to go through the processes involved in requiring a given school to provide specific things.

Am interested to hear from PARENTS on these issues and how you have handled them.

Cathy

Document 6 of 25

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Date: Wed, 19 Jun 1996 18:19:09 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Rebecca Marshall

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Yes, NY does have an advocacy program. It is called Advocates for Children and they can be reached at 718 729 8866 (voice only). I know they work with parents from the NYC Board of Ed. I am not sure if they can help with BOCES or not, but if not, they could be a valuable source for other advocacy groups on the island.

I would be happy to provide you with the name of a great contact person at Advocates if you contact me privately.

Good luck.

Rebecca
rebeccam@spacelab.net
There is never a guarantee that a particular language or educational policy will "work" but when that policy reflects the goals of the people it is to affect rather than those of either foreign missionaries or a colonial government, and when it reaffirms rather than negates a people's knowledge of its culture and heritage, then there is no better prospect for its success.
- Lisa Delpit, "Other People's Children, Cultural Conflict in the Classroom", The New Press, NY 1995:90.

Document 7 of 25

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Date: Wed, 19 Jun 1996 21:58:04 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Christofer deHahn

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF <

I'm just about finished with this year's IEP process. The best advice I can give is don't be adversarial. Be a team player. Be willing to compromise. Do your research and have facts to back up your desires. Fight for the big points and compromise on the little points. Know the law and use it if you have to, but by all means avoid a hearing or even mediation if at all possible. If you show up and make it clear that you know the law, specifically how it pertains to your child's needs, there is little chance that you'll need to take such a drastic and final move such as mediation or hearing.

Good luck,

Chris

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Document 8 of 25

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Date: Wed, 19 Jun 1996 23:02:26 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: BennaT@AOL.COM

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Unfortunately Birgit, you as the parent do not have the right under IDEA to choose a special education placement for your daughter (The new version of IDEA recently passed by the House will allow you a vote). You may choose placement but if the school refuses to provide special ed services there you must file due process under IDEA and must prove "most appropriate placement" is the one you choose.

Mediation is a good step and sometimes will resolve the issues. The school must have some reasons for refusing to provide an appropriate environment in your neighborhood school. You as the parent should know their reasons for wanting your child to attend school where the other deaf and HH students and the professionals specific to their needs are gathered, and they should know your reasons for wanting your child to be away from the program they have designed to meet her needs. Case law will be on your side in choosing the neighborhood school after your daughter is fully mainstreamed. There is a case from Texas in the 5th Circuit Court this month on this same question. On the other hand, a lot of valid literature in deaf-ed (and many parents of deaf children) will tell you that deaf and hard of hearing children derive great benefit from being with other deaf and HH children.

As parents we have an ocean of communal tears, many of us searching for that loose brick in the wall of special education. There ARE options, such as mediation, due process, private school, state school for the deaf, moving, and home schooling. We need to know about ALL the options and get lots of input from our child in order to do what is right for our unique child. Keep reading and learning from a variety of sources; about deaf education, and about being a deaf adult. That information has helped me be more objective and creative about identifying and meeting my daughter's needs.

Benna Timperlake, who is still learning about my daughter's needs and still looking for a loose brick at my local co-op!

Document 9 of 25

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Date: Wed, 19 Jun 1996 23:08:32 EDT

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Cathy Brandt

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

In-Reply-To: Message of Wed, 19 Jun 1996 23:02:26 -0400 from

I did not know that Birgit is the parent. I have totally misunderstood. I thought she was the teacher in this situation. Guess I have missed some crucial information along the way.

So, Birgit, as the parent do you have anyone from "the system" working with you?

Cathy

Document 10 of 25

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Date: Thu, 20 Jun 1996 07:54:47 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Yes, we have been to an independent evaluation. The results were quite different. The test results from BOCES (made in 12/95 together with the preliminary IEP for 1996/1997 which also had been made in 12/95) showed e.g. an expressive language of a 2.11 year old child. The independent testing from April 1996 showed in a similiar test an expressive language of a 4.3 year old child. We thought the first evaluation had been done too early in the school year and the child developed tremendously throughout the year. In addition there were some problems with the program of the Cochlear Implant at that time. However, the BOCES recommendations not the independent tests have been the basis of our last CSE.

Birgit
birgit@asterix.bio.sunysb.edu

Document 11 of 25

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Date: Thu, 20 Jun 1996 22:25:11 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Christofer deHahn

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

OK, now we're getting somewhere. The independent evaluation results are every bit as important in determining the ed plan as the staff testing. They obviously wrote the IEP to meet their own needs. If the results of the independent testing aren't included in the ed plan then they are in violation. Did you ask them about this? What was their answer?

If they are refusing to acknowledge the independent evaluation results, and have said so, try to get them to put it on paper. Then, at that point, I would think that mediation, and/or advocacy is your next step.

Where are you on the timeline? If this was my child I would have figured out where we were on the timeline and have plotted out the critical dates.

Did you reject the IEP in full or in part? Are there any services which your child is at risk of not receiving because that section of the IEP was rejected?

Chris

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Document 12 of 25

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Date: Thu, 20 Jun 1996 22:13:30 -0500

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: DeLores

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Back when I owned Educational Advocacy Services I learned a neat maneuver to use when trying to get something in writing from the school district that had been stated orally. I always followed up each meeting and phone conversation with a letter in which I stated my understanding of what was stated at the meeting or on the phone. This letter was always sent to the District Superintendent, building principal and Special Ed Director by certified mail with return receipt requested. Of course, I kept copies of all this correspondence. If they did not respond back to me stating this was NOT what they said I was able to use these letters in due process hearings as evidence. Of course, this also gave them a chance to put into writing what they REALLY meant to say!

Whenever I attended a meeting I always brought a tape recorder and taped the meeting. I informed them I would be doing this and they were welcome to tape it also if they liked. This was for information for myself rather than evidence. I found that when I was emotionally involved during a meeting I was apt to miss something important that someone said. It always amazed me over the years when I would play back those tapes and pick up on all the stuff I literally missed during the meeting itself!

When my youngest daughter graduated from high school, I will never forget the look of relief on the District superintendent's face when he came down from the podium to shake my hand. Two years later everyone about had a heart attack when they found out we now had a deaf/blind exchange student from Australia living with us!

DeLores Wilson
dhag@mtsi.com

Document 13 of 25

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Date: Thu, 20 Jun 1996 23:24:11 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Linda Semesky

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Birgit,

My son is also HI going into a mainstreamed First Grade situation from a mainstreamed KG situation where they did lots wrong. Alex's hearing is 100+ db in his right ear and 10 db to 2500 hz in his left ear. Then at 2500 hz starts dropping to 100 db at 4000 hz. He is totally oral and has not been offered sign since he was 3...not at our request...we wanted sign continued.

We are fighting similar battles to yours though our school system is accommodating where it doesn't cost them money. For example, they will be putting cut tennis balls on the feet of the chairs in the art and music classrooms. All classrooms in this school are carpeted except these. Alex will have an ALD and right now we are battling the right to continue to take it home which he was allowed to do this year but not next year. They too tried to say that if Alex requires acoustic modification in order to succeed in first grade, then he must go to a self-contained classroom. WRONG ANSWER...ILLEGAL STATEMENT..and we're going to nail them on it. At this point, the county runs scared of us (We are in Baltimore County, MD) to a certain extent because we already took the system to court once and won hands down. I represented us. But, it was a very black and white issue where there was no argument that we were in the right. We are now into more gray areas such as acoustic modification and our request that Alex receive part of his education with sign as a supplement because he is at great risk of losing more hearing through puberty. We are also battling for his right to eat lunch outside of the cafeteria due to noise. We are also fighting for the school system to provide a hearing aid for Alex even though his hearing loss profile is not guaranteed to benefit from an aid. They contend that aids are the responsibility of parents, not the school system, despite what the legal rulings have said.

We know that at this point, we must bite the bullet and get an attorney to help us with due process. It's amazing how they listen when it's not the parent (esp the mother) talking. You really need to be filing due process now so that things will be in effect by the time school starts! Sounds like the system is being a bunch of jerks totally unwilling to accommodate.....and it's illegal. However, the state of special ed throughout the US is putting many of us with HOH children in this boat. They say that your child hears well enough to be mainstreamed and thus needs no support. Even though Alex scored at the 30% in parts of vocabulary assessment and that was after huge support from speech path and Itinerant, we are now told that because he scored in the average range, he no longer needs help. And, because the school audiologist describes the impact of Alex's loss on his education as minimal, they refuse to do acoustic modification. He does receive an FM system and accommodations will be made next year for special events.

Though it's hard to do, try to see if you can find someone to advocate for you for free....even volunteer to do their research if they show you how. Looking through law cases is not that hard if you know how to use any kind of reference material. If you have to pay, maybe you can do it on a contingency basis where they get paid only if they win. However, even if you have to pay, the amount of services you would gain would ensure your child's survival and would more than recoup your money in half a year.

Under separate cover, I will send you a letter that I sent to another club I belong to re my latest battle with Alex's ALD going home for the summer.

By the way, I have organized a parent's support group of parents with HOH children to fight these exact battles. We've been able to get most of these parents what they wanted through exchanging info and moral support. Two of us though, are in your situation and are having to go to due process. We welcome you to join our group. Sounds like your issues are exactly those we deal with and most of our kids are 5-6 years old with a couple younger.

Gotta run...get going, document your issues, what you want to have happen, prioritize what is most important and go find an attorney. You will not convince them otherwise, no matter how much documentation you provide. I provided a two foot high stack of documentation from literature I got from journals at Johns Hopkins re justification for acoustic modification for Alex and no one ever bothered to look at it....Lipservice is given to us as members of the team! And, we have a school that is incredibly supportive of Alex...it is special ed that keeps mucking up the waters.

Bye for now!

Linda S.

Document 14 of 25

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Date: Fri, 21 Jun 1996 09:51:44 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

I sent the tests of the independent evaluation to the district 2 months ago and asked them to include this in the IEP, it also had very good recommendations on how to mainstream a deaf child in it. At CSE the chairperson had not read it and was reluctant to include it in the IEP.

We were also told at CSE that only speech therapy, itinerant services as well as the FM trainer are issues for CSE. Environmental modifications (rubber tips on chairs or carpeting, static electricity problem with the cochlear implant),closed captioned TV and movies, in service training of the teachers, the question of which school, feedback from the teachers (Team approach), schedule for gradual mainstreaming are not issues for the CSE. These issues could be discussed in a separate meeting, promises made there will not been given in writing.

The subject with getting speech during summer is sticky: Right now our daughter is in BOCES special ed class with partial mainstreaming. In Fall she will have to be assigned (that's what the district told us) to a special ed class with gradual mainstreaming for initially half the day. This is the reason they will not provide speech in a full mainstream setting (during summer it will be our private daycare which has experience in teaching with deaf children), although the child qualifies for an extended school year (12 months program with speech 5 times a week).

One argument that came up again and again was, items BOCES does not have, the district will not be willing to buy (e.g. rubber tips on chairs). The other argument was since the child is hearing so well with the cochlear implant it is not deaf anymore. They did not want to understand that a deaf person stays deaf throughout his/her life and will have certain needs irrespective of his/her language and communication skills.

We had to sign the CSE (reluctantly) because otherwise the district would not have been obliged to start the process. At CSE we were told to be confident although nothing is in writing, the subjects will be addressed and a satisfactory resolution will be found.

However we scheduled a new CSE 2 days after, since it turned out to be very problematic to discuss the non-CSE issues. Meanwhile I talked to the parent advocacy center which was of great help. They mentioned that all issues are CSE issues and it is the child's right to get them.

Thank you a lot so far, it is of great help.
Birgit (parent) who tries to understand the fine tuning of laws now.
birgit@asterix.bio.sunysb.edu

Document 15 of 25

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Date: Fri, 21 Jun 1996 22:52:51 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Christofer deHahn

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Then I think you're in a reasonable position to obtain advocacy and possible mediation.

>The subject with getting speech during summer is sticky: Right now our daughter is in BOCES special ed class with partial mainstreaming. In Fall she will have to be assigned (that's what the district told us) to a special ed class with gradual mainstreaming for initially half the day. This is the reason they will not provide speech in a full mainstream setting (during summer it will be our private daycare which has experience in teaching with deaf children), although the child qualifies for an extended school year (12 months program with speech 5 times a week).

Can you prove that she will regress without the summer speech services? If you have the educators on your side it shouldn't be hard to prove. How have your daughter's progress reports detailed the progress of her speech? If they show a definite trend towards gaining skills then there is a better chance of proving regression.

>One argument that came up again and again was, items BOCES does not have, the district will not be willing to buy (e.g. rubber tips on chairs). The other argument was since the child is hearing so well with the cochlear implant it is not deaf anymore. They did not want to understand that a deaf person stays deaf throughout his/her life and will have certain needs irrespective of his/her language and communication skills.

AAAAAARRRRRRGGGGGHHHHH. The child is deaf. Whether you desire Deaf culture immersion or not is irrelevant. The child is not hearing. No matter how well she functions in the hearing world she is not hearing. This is going to be a tough thing to get across to them. Maybe another parent who has gone through this can help. We were fortunate that everyone clearly understood that Patrick is deaf, no matter how well he functions.

>We had to sign the CSE (reluctantly) because otherwise the district would not have been obliged to start the process. At CSE we were told to be confident although nothing is in writing, the subjects will be addressed and a satisfactory resolution will be found.

Did you accept it in full or in part?

Wishing you the best of luck,

Chris

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Document 16 of 25

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Date: Fri, 21 Jun 1996 23:44:38 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: BennaT@AOL.COM

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

In a message dated 96-06-21 12:25:59 EDT, you write:

>One argument that came up again and again was, items BOCES does not have, the district will not be willing to buy (e.g. rubber tips on chairs). The other argument was since the child is hearing so well with the cochlear implant it is not deaf anymore. They did not want to understand that a deaf person stays deaf throughout his/her life and will have certain needs irrespective of his/her language and communication skills.

You are so right! Your child is deaf, with or without the implant! The regs define students as qualifying for special ed services if they have a hearing loss, without amplification, that interferes with their education. That includes any hard of hearing child, too.

By the way, old tennis balls are free, and make Wonderful rubber stoppers on chairs - ask the school to be more flexible, and suggest that the BOCES use them also!

>We had to sign the CSE (reluctantly) because otherwise the district would not have been obliged to start the process. At CSE we were told to be confident although nothing is in writing, the subjects will be addressed and a satisfactory resolution will be found. However we scheduled a new CSE 2 days after, since it turned out to be very problematic to discuss the non-CSE issues. Meanwhile I talked to the parent advocacy center which was of great help.

Great, Brigit! You are doing some great work on behalf of your daughter. Don't give up! Sorry they seem to have tricked you into signing the CSE! Hope you didn't sign that you agree. You have the right to sign and also disagree (that is a good idea because your signature helps prove you were there!) with the CSE. You also have the right to write anything you wish anywhere on the document. If you suggest a service or modification and that is refused, be certain that somewhere on the CSE papers or in the minutes, that communication is documented.

Keep working for your child's needs

Benna

Document 17 of 25

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Date: Sat, 22 Jun 1996 00:53:07 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Mcfdyn@AOL.COM

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

In a message dated 96-06-21 12:25:59 EDT, Birgit writes:

>We had to sign the CSE (reluctantly) because otherwise the district would not have been obliged to start the process. At CSE we were

The thing to do here is to add the statement to your signature.

This will at least protect you against statements that you signed the CSE therefore must agree with it.

kathy
kathy mcfadyen
mcfdyn@aol.com

Document 18 of 25

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Date: Thu, 20 Jun 1996 06:48:23 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Youngx2@AOL.COM

Subject: Re: CSE again...

To: Multiple recipients of list EDUDEAF

This is my first posting to this list, so I hope I'm doing it right. I have been watching the list for a couple of weeks, and wated to offer some additional possible resources.

I am a social worker working in an educational program for students who are Deaf and HoH in upstate NY. We have, at times, been in similar situations with districts wanting to include students in their home schools. As an advocate working with students and parents, I am well aware of the struggle to get accurate information regarding what the district must provide.

I have found the staff attorney at our local Independent Living Center has been helpful. You may want to try your local ILC for additional support.

Another 2 sources that have helped out have been the NYS Advocate for the Disabled and the Disabilities Law Clinic at Albany Law School. I don't have the numbers at home, but I can post again later, or you can call information for the numbers.

It is also my understanding that if your child was to be educated in his/her home school that itinerant speech services can be contracted through BOCES, as well as a consultant teacher of the deaf. It may be a bit pricey, but I believe it can be done!!! Districts that included Deaf/HoH students can buy itinerant interpreter services from BOCES as well.

Good luck. I will find those numbers and post again.

Document 19 of 25

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Date: Tue, 2 Jul 1996 10:48:37 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Linda Semesky

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Hi Chris,

I am glad that you are having such a positive experience in getting what your children need from the school system. I too have tried to be a team player and cooperative. However, in this county, the more the parent gives, the more the school takes back, not vice versa. The rules to a good negotiation are that each side should leave a little bit on the table for the other one so that both sides feel that they have won in some fashion. I was a crude oil broker for several years and am great at negotations with rational people. However, when a system is irrational, negotiations break down and being a cooperative, team player is no longer effective. In our County, logic does not rule in special ed. It's who you know and who is the squeakiest wheel that gets services for their child. And, of the 14 parents in the internet support group that I have formed for the parents of hoh children, at least 8-9 are encountering the exact same issues in their school districts and they are all in different states. So, many of us are forced into mediation and or due process because the system refuses to accommodate our children's needs. The school system knows that they can save money by refusing services and if one out of one hundred goes to due process and forces the school system to provide services for their child, they still have saved by not providing the service to the other 99 children. So instead, they repave their parking lots and buy new computers for themselves and blow millions in fraudulent management of facilities management. Currently, there is one itinerant teacher for the HI in the entire central area of Baltimore County. Next year, she will move into management of the new itinerant teacher who will replace her. Makes a lot of sense! One person managing one other person! Wouldn't it be great if both were providing itinerant teaching support! That would be oh too logical for here! So, at this point in time, do I feel bad getting everything from the system that Alex has a right to? NOPE!!! And, does it bother me that others won't get what they need. YES!!! But, it won't be because of their expenditures for Alex! Because as other special education support people have said to me.....the money is there...it is just mismanaged and wasted if it is not used for your child. It's amazing how special ed pleads insolvency until they have to find the money because of potential due process....somehow it "magically" appears. So, am I too cynical? YES. Rightfully so? YES!! I have spent 5 years in the system battling for Alex to receive services. Yes, and I mean battling...including filing suit and subpoenaing the governor, US Dept of Ed, Congressmen and Representatives both at national and state levels, head of the health dept, County administrator and Superintendent of Baltimore County Schools. And, you know what for...just to get them to follow the law. When Alex was 6 months old, he entered the Infant and Toddler Program after getting out of a one month stay at Johns Hopkins. We developed Alex's Individualized Family Service Plan the last day before they had to be in for the summer session. No one even knew how to fill out the forms so all of the therapists and the case manager sat around in my living room and we voted on what the questions meant. (Note, the Fed law had just gone into effect, mandating all of this) We got the form turned-in in time. However, the next week I got a call which said that despite the fact that Alex definitely required services and qualified, all of the system's therapists were overbooked for the summer and there was no more money to provide services. I called the State...they said that our County had money sitting there that they were not asking for. I called the County and it said there was no money. I called the US Dept of Ed, and they said to look to the State. I talked to the school, who said it could do nothing. When I asked the school if they would be angry if I sued for services, they said, "Please do.....we need all of the support we can get to get services for our children!" So, we filed due process papers and agreed to go to mediation. I represented us because it was a cut and dry case. To make a long story short, we went in front of an administrative law judge and she was furious. She nailed the school system and the health department who administered the Infant and Toddler Program. She told them to provide support and they had to hire a private hospital to come provide Alex's physical, occupational and speech therapies. It cost them $6-7,000 for that summer. Just think of how many other children could have been helped if they had done their job right! And, yes, I feel bad for those children. But, you know what? Alex is my number one priority and I have to make him number one! When he was born he was expected to die. He had two emergency transfusions and at one month of age went into heart failure. At 6 months of age, his prognosis was that he would be in a wheel chair, vegetative with Cerebal Palsy and fed with a Gtube in his stomach. He would never talk, eat, walk, or even swallow. He had three holes in his heart and couldn't keep food down. So they tied his stomach around his esophagus so he could keep food down and put in a feeding tube directly into his stomach. He couldn't hold his head up and had hypotonia...floppy muscles. Well, to make a long story short, we fought for everything we could get for him and what we got was still much less than what we KNEW as parents Alex needed. He got 3 physical therapies, 3 occupational therapies, 3 speech therapies and one school for the deaf visit weekly until he was two. And, you know what....IT WORKED! At one year of age, he was able to eat by mouth. Two of the holes closed in his heart and he's left with only one small one. He has the gross motor skills of a child 2-3 years older. He's been reading since he was two...before he said his first words. He is now on the low side of normal with his fine motor skills and despite this is writing better than 70 percent of the kids in his kindergarten.

We paid privately for many supplemental therapies, especially speech. And many neurolinguistic assessments....2 a year at $500 a shot. However, the main reason we fought so hard for services from the County was that their therapists were twice as good as any private ones we ever tried. So, it wasn't that we were unwilling to pay....we had to have them for Alex because they could work miracles with him...and that's what he is now...everyone's miracle kid! No one can believe that at age 5 next year (Oct is his bday) he will be entering a regular first grade after having successfully completed a regular ed kindergarten this year.

Maybe some of this explains why I feel just a bit jaded about the system and the fact that it often does not really have the best interest of the children at heart.....and this is not just from my experience with Alex. I volunteer in a local autistic middle school program run by the County and the first day of school, they weren't even given chairs, or any supplies. The teacher showed up to find an empty room and had to fight to even get her kids furniture and minimal supplies. She had to spend thousands of her own money and outfit the entire room to make it a classroom. And, because she raised a fuss about this, they've been trying to destroy her! Politics is all it is!

Well, I've gone on long enough. I hope that you continue to find success for your kids where you are. As long as we are in this school system, we know that there will always be battles for us.

Linda S.

Document 20 of 25

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Date: Tue, 2 Jul 1996 13:02:23 -0500

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: DeLores

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

The more research and fact finding you can do for yourself the less you will have to pay to an attorney. Good luck! One little side light regarding the due process suit we brought against the Oregon School for the Deaf. While the attorney from the Attorney General's office was questioning the school's experts in an attempt to demonstrate that our 10 year old daughter really wasn't reading at a high school level our daughter got up and went to a bookshelf (the hearing was being held in the school library) and got an Encyclopedia Brittanica (adult version)and proceeded to spend the rest of the hearing sitting there curled up in her chair directly in front of the hearing's officer reading the book. The hearing's officer eventually called her forward and asked her to describe the articles she had just read. She gave a ten minute "book report". Sometimes, when it is appropriate, your deaf child can be their own best witness in obtaining what they need.

DeLores Wilson
dhag@mtsi.com

Document 21 of 25

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Date: Tue, 2 Jul 1996 11:32:14 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Linda Semesky

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

Hi Delores,

I agree with you re the due process when it is a cut and dry case of the school violating the law. However, when you get into gray areas where differing case interpretations can impact your case negatively, and a knowledge of past case precedents is important it becomes alot harder. Also, I know that our county takes attorneys alot more seriously than they do parents because it usually means the parent is serious. If you're a meticulous person who covers every base and isn't intimidated easily, go for due process and represent yourself, especially if you have a cut and dry case. But, if you are a person who is easily intimidated and has no clue how to go about doing legal research, you can get eaten alive in trying to represent yourself, especially in gray areas. I think that that is why there are so few official complaints filed. Special ed attorneys often cost a lot of money. So many people can't afford them. (Yes I know there are probono...but try getting a competent one who has time around here...close to impossible!) If they can't and need to represent themselves, only a small percentage are capable of representing themselves. These are just the odds that school systems like ours use in their favor!

Gotta run! Talk to you later! Glad you're so able to advocate for you and yours! I've been great at it, tho this time looks like we're going to have to bite the bullet and get legal counsel...tho, I'm getting my ducks in a row and trying one last meeting with the school system attorney and special head honchos before we give up!

Linda S.

Document 22 of 25

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Date: Thu, 11 Jul 1996 07:22:42 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

4 weeks ago, I posted a message on this list dealing about frustration and the child's rights for appropriate education. I got an overwhelming response of help and would like to thank you all. The greatest thing probably is not to be alone and to be able to share information and advice like it is done on this list. I particularly like to thank Chris deHahn, Linda Semesky and Cathy Brandt for encouraging us (the intimidated parents), to study the law and to advocate for our daughter. We went through a second CSE meeting yesterday after having had a terrible fight at the first meeting. We got what we asked for, it was not easy, but it was a respectful meeting. I would like to attach a list of strategies and laws that helped me to go through this. I know that every case and every committee is different but nevertheless some hints might be helpful for other parents in similar situations.

1) Attempt to stay peaceful and calm throughout the meeting: This was the hardest part. I started to make myself a mantra: "I'd like to make peace, I'd like to make peace, I'd like to make peace...." repeating it several times a day starting a week before the meeting.

2) Be precise: I wrote down a list of 12 issues with explanations we wanted to have addressed at CSE (Committee of Special Education). I also wrote a (polite) letter with the request to go over these issues before the meeting. It helped a lot to have everything in writing and it was very good to know what to expect from them beforehand. This enabled us with bargaining power.

3) Set priorities: We found out which are the most important issues and which ones we can compromise on.

4) Getting information from the parent advocate board and their lawyer was a great source. The EDLAW Web site (at www.access.digex.net/~edlawinc/) is great to find out about laws. Particularly helpful I found the "Compliance with the Americans with Disabilities Act". This is full of explanations about ADA (Americans with Disabilities Act).

5) Documentation: A letter from a specialist counts more than 1000 words from a parent. Statements like: no speech therapy in summer would lead to a substantial regression and therefore is considered to be required cannot be neglected by the committee. Sound amplification system requirements etc.

6) Laws: Source: Compliance with the Americans with Disabilities Act:
- Provision of Free Appropriate Public Education (FAPE): A school district is required to provide regular or special education and related aids (including equipment and equipment modifications to accommodate the needs of students with hearing impairments) and services (including speech therapy and interprets for students with hearing impairments).
- Separate Programs: Even where the school district operates a permissibly separate program or offers a permissibly separate service of benefit, it may not deny participation in the regular program of provision of the regular service or benefit to any qualified individual with a disability.
- Communication Requirements: People with hearing and speech disabilities must all have the opportunity to receive and present communication in a manner that is appropriate and effective. Communication support must be provided in a manner that enables people with disabilities to participate on an equal basis with all others, unless to do so would result in a fundamental alteration in the nature of a service, program, or activate an "undue" financial or administrative burden. Such exceptions rarely apply. It is important to note that the fundamental alteration/undue burden exception does not apply to the provision of related aids and services that are necessary to ensure FAPE.
- What type of auxiliary aids and services to provide: The title II regulation has a requirement, not specifically contained in Section 504, that public school systems must give "primary consideration" to the requests of the individual with disabilities in determining what type of auxiliary aid and service is necessary. School districts must honor this request unless they can demonstrate that another aid or service will be effective or it would result in a fundamental financial alteration/ undue burden of the program.
- Assistive Listening devices (e.g. FM system) have to be provided under Title II.

This was not easy in our case since a FM system that works with the Cochlear Implant is just out on the market. We requested a free field sound system (teacher wears a microphone, 2-3 loudspeakers are in the class) This is of great importance in assembly areas (gym) were acoustics are lousy.
- closed captioned TV has to be provided under Title II.
- environmental alterations such as noise reduction in the classroom (e.g. carpeting, chair socks, felt-tips on chairs, egg cartons or murals on the wall, removal of old and therefore noisy fluorescent lights are all reasonable and have to be provided. source: IDEA (Individuals with Disabilities Education Act):
- Least restrictive environment: means that placement of students with disabilities in special classes, separate schools or other removal from the regular educational environment occurs only when the nature or severity of the disability is such that even with the use of supplementary aids and services, education cannot be satisfactorily achieved.... The placement shall provide a maximal extent of education with non disabled students and shall be closed to the student's home.
- speech in summer: Twelve months special service and/or program. Students shall be considered for twelve-month special services and/or programs in accordance with their need to prevent substantial regression.....A special service or program shall operate at least 30 days during the months of July and August except that a program consisting solely of related services shall be provided with the frequency and duration specified in the students' IEP
An independent evaluation at own expense must be considered by the public agency in any decision with provision of FAPE.
- Technical assistance and training: Each State Educational Agency (SEA) shall carry out activities to ensure that teachers and administrators in all public agencies are fully informed about responsibilities for implementing Reg Sec. 300.550. and are provided with technical assistance and training necessary to assist them in this effort.

In our case they initially did not want toprovide in-service training of teachers and staff prior to the first day of school. I made a case that they cannot provide Appropriate public education if none of the teachers knows how to address a deaf child by day 1. Usually there are a couple of days before school starts where teachers should be available for in-service training.
- The IEP (Individualized Education Plan) has to be implemented as soon as possible.
- In each meeting the child's teacher has to be present.
- The IEP must contain the projected dates for initiation of services and anticipated duration of services and the extent the child will be able to participate in the regular classroom.
- The IEP should be developed with the help of the parents. Parents have the right to add goals to the IEP.
- The teachers have to make a good faith effort to reach the goals indicated in the IEP.
- parent involvement: Public Law 101-46, IDEA and Public Law 99-457 recognize the need of parent involvement in educational planning. Title I (IDEA): School level parental involvement policies are to include parent/school compacts, which spell out goals, expectations, and shared responsibilities of schools and parents as partners in student success. IASA (Improving America's School Act , 1994): To ensure effective involvement of parents and to support a partnership among the school, parents, and the community to improve student achievement, each school and local educational agency may involve parents in the development of training for teachers, principals, and other educators to improve the effectiveness of such training in improving instruction and services to the children of such parents.

Document 23 of 25

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Date: Thu, 11 Jul 1996 12:03:00 -0600

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: "Johnson, George (M&C Don)"

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

I want to thank Birgit (I wouldn't know how to begin to pronounce your name) for posting her list regarding CSE and parents. From the sound of some of the letters I have read on this list I feel like a neglectful parent. Our daughter is now 4 y/o (profound loss) and last fall we had one very short meeting with her pre-school teacher (who is NOT a school district teacher - she works through the state school for deaf & blind) and a school district speech therapist to develop her IEP. No arguments or fighting. That makes me think that we do not know enough.

Chris deHahn has mentioned taking advocacy classes. Is this something available only in larger metropolitan areas? What is TEAM and SPED?

At what age should an independent evaluation be done? How do we arrange the evaluation? I assume we contact someone at the local school district office.

Thanks again,
George Johnson

Document 24 of 25

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Date: Fri, 12 Jul 1996 00:19:01 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Linda Semesky

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

George wrote:

>>At what age should an independent evaluation be done? How do we arrange the evaluation? I assume we contact someone at the local school district office.

If you are comfortable with their evaluations and they seem on target, you won't be able to get the system to pay for an independent evaluation. The only time that they have to is if you can prove that you have just cause for not believing theirs. What kind of assessments have been done so far, and do they seem logical?

If you think they aren't and/or that an assessment that the school system's representatives have done is off-base, you can request an independent evaluation for each evaluation that you disagree with as many times as the original evaluations are done.

In each case, like Chris said, they will only pay for one independent eval and may be able to force you to choose from a list of independent evaluators that they deem competent.

Note though, that you can always obtain your own private second opinion. Often, a person outside of the system has a different perspective and can open your eyes to some options that you did not think of or know about.

Things generally are a lot easier if your child goes somewhere like the School for the Deaf because both the administration and staff are usually trained and equipped to handle children with similar needs. And, because several children can benefit from the same technology or teacher, the cost per child is reduced. I too am impressed by both the local school for the deaf and the self-contained programs in the county. It is the lack of support for the mainstreamed kids that is our concern and the concern of most of the parents in our support group.

That may be why you don't feel as frustrated as many of us who have children in regular ed classes. You are dealing with an environment equipped to accommodate the needs of a deaf child. Your child is not being thrust upon a teacher and a school administration who has usually never seen a hoh/deaf child before nor has been trained in accommodating their needs. In addition, instead of a small class size that you have in a specialty program for deaf/hoh, this teacher will have from 24-30 other children whose needs must be accommodated. So, how can that one person give your child the attention that they need to succeed. They can't, and other supports must be put into place. That is what is not happening in our school system and too many school systems in the US and even in the world!

If my child were in a self-contained program I would be concerned abut the following:

1- Should the child be oral, use cued speech, use ASL, use SEE. You need to know the benefits and problems with each and decide what combination of these you want to have them learn.

2- Are they receiving sufficient speech...if your goal is to have them be oral

3- Are they being taught speechreading, and with what frequency

4- Have they been assessed to ensure that there are no other hidden learning disabilities.

5- Are they better off being in a self-contained program or mainstreamed with appropriate supports.

6- Do they receive sufficient audiology support. Has the audiologist selected the optimum hearing aid configuration.

7- Do they have access to an ALD...assuming that they have some residual hearing.

8- Do you believe that they should have a cochlear implant or not

9- Are they learning skills to allow them to function in the hearing world..if you believe that is necessary

10-Is the instruction at a high enough level to ensure that your child is progressing at their optimum pace.

11- Does your child have opportunities to see positive hoh/deaf role models

12- Does your child have opportunities to interact with hearing children...if that is even a goal

13- Does the school use closed captioned video and other techniques to optimize learning for children with hearing problems

It is late, so I can't think of any more off-hand, but these are the types of issues I envision are important to someone in a self-contained program. For mainstreamed programs, the issues compound because then you have to ensure that your child is receiving an equivalent level of support in an environment that is not designed around their needs.

Hope this helps and that I haven't confused you more.

See ya!

Linda S.

Document 25 of 25

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Date: Fri, 12 Jul 1996 08:59:55 -0400

Reply-To: A Practical Discussion List Regarding Deaf Education

Sender: A Practical Discussion List Regarding Deaf Education

From: Birgit Woelker

Subject: Re: CSE again

To: Multiple recipients of list EDUDEAF

You do not want to do it unless you think your child's performance is much better than the initial evaluation (which should be done at least once per year, psychological eval every three years) shows. This is especially the case if you want to get your child mainstreamed and the district insists in having the child in special ed (pushing into the mainstream is not always good, in many cases the school for the hearing impaired or the special ed class is much better for the child).

If you want an independent evaluation, contact your local service for the deaf/hoh. Addresses you can find on the deafweb at
http://deafworldweb.org/dww/int/us/

We were lucky to be able to convince our health insurance to pay for the biannual checkups at our local server (NY League for the Hard of Hearing). I did not make a big fuss about the independent evaluation, just submitted the bill with the regular bills of the checkup. You can get the district to pay only if there is a significant difference between the 2 evaluations.

The school district speech therapist might not be qualified to give appropriate speech therapy and/or recommendations for the IEP. Recommendations might include room accommodations, goals for speech and language improvement, recommendations on how the teacher should address the child, amount of speech therapy per week, extended school year (12 month program), need of assistive listening devices (e.g. FM trainer) etc. However, if your daughter is in the school for the deaf and blind currently, the preschool teacher most likely knows about this.

Uploaded by: Melissa Close/Kent State University/Deaf Education Major