Re: Digest for aacparents@googlegroups.com - 8 Messages in 1 Topic

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Annie Smith

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Nov 6, 2013, 10:19:04 AM11/6/13
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Thank you all who have responded.  To answer your questions:

- Our CA school district is concerned the device will cause my 7 year old daughter seizures. I have obtained a letter from her Epileptologist in addition to a world renowned Neuro specializing in her disorder of Rett Syndrome to squash that. It was an insult to my intelligence and character as a mother that I would obtain a device that induces seizures for my child.  

-Do I need to agree to having another in house AAC eval before I request an IEE? They did one 2-3 years ago that I did not agree with.

- We just received the device through a private doner. I'm desperate for ongoing support and training.

My daughter is in a stable good place right now medically. I'm anxious to take advantage of this calm time as I know it could change on a dime. Oh and I'm 6 months pregnant!! 

Thanks again for all your input. 

 


On Tue, Nov 5, 2013 at 9:44 AM, <aacpa...@googlegroups.com> wrote:

Group: http://groups.google.com/group/aacparents/topics

    Annie Smith <ann...@gmail.com> Nov 04 12:29PM -0800  

    Need help!
    I have an eyegaze device that school is unsupportive of me bringing to
    school. They want me to sign a waiver of liability should anything happen
    it they are not liable and they are contacting my Neurologist because they
    claim it induces seizures (there has been no evidence of that) I want to
    request an outside AAC eval (their AAC is in house within district). Again
    we finally got the device and now I'm still having to battle for support at
    school! *Need ideas justifying outside AAC eval.* Not willing to set my
    daughter up for failure with a team that doesn't believe in her. You would
    think saving the school district $20,000 and obtaining my own device would
    be a good thing. Apparently not. Thoughts??
     
    --
    ***What is Rett Syndrome? Watch this video. http://youtu.be/bBfPG2aQflE
     
    ***Want to make a difference for millions of girls? Visit
    http://www.mikyla-cure.org/

     

    Mcda...@aol.com Nov 05 10:04AM -0500  

    Hi, something similar happen to us years ago. Ask them if they have
    people sign a release for electric wheel chairs or hearing devices ETC? Are
    they afraid your child will have seizures or are they afraid other students
    in her class will have them from her eyegaze device? We ended up filing for
    due process because they said our son couldn't use his SGD in the
    preschool setting. Our school district paid for the warranty for the device and we
    were told if it was broken during school time their insurance would cover
    it.

    What state are you in? In our state of Massachusetts (home of the
    World Series Champs the Boston Red Soxs) You don't have to state a reason for
    an IEE. I would assume some you consulted outside said she should use an
    eyegaze right? Are they refusing to accept that.....sounds like it but just
    want to make sure. Keep us all posted and hopefully others will reply
    that are much better educated then I am about this.

    Mary-Clare


    In a message dated 11/5/2013 9:41:34 A.M. Eastern Standard Time,
    ann...@gmail.com writes:
     
    Need help!
    I have an eyegaze device that school is unsupportive of me bringing to
    school. They want me to sign a waiver of liability should anything happen
    it they are not liable and they are contacting my Neurologist because they
    claim it induces seizures (there has been no evidence of that) I want to
    request an outside AAC eval (their AAC is in house within district). Again we
    finally got the device and now I'm still having to battle for support at
    school! Need ideas justifying outside AAC eval. Not willing to set my
    daughter up for failure with a team that doesn't believe in her. You would think
    saving the school district $20,000 and obtaining my own device would be a
    good thing. Apparently not. Thoughts??
     
     
     
     
    --
    ***What is Rett Syndrome? Watch this video. http://youtu.be/bBfPG2aQflE

    ***Want to make a difference for millions of girls? Visit
    http://www.mikyla-cure.org/
     
     
    --
    You received this message because you are subscribed to the Google Groups
    "AAC Parents" group.
    To unsubscribe from this group and stop receiving emails from it, send an
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    Dawn Caldwell <dcaldw...@comcast.net> Nov 05 03:38PM  

    How old is your child?  What was your child using before at home and at school?  What is in the IEP?  Why is the issue cropping up now - school has been in session awhile.  Did you just get the device?  Is this a new school for your child?  Was the team aware that you were purchasing this device?  Did you coordinate a training plan with the AAC person for the school team?  How high up the chain of command have you gone?
     
     
     
    I would suggest you contact an attorney familiar with IDEA and your state as daily communication is vital to education .  The Peak Parent center ( www.peakparent.org ) is also a good resource (Shirley Swope).  Either one should be able to provide you with the IDEA law that supports AAC use and a school's responsibilities.  Knowing the law as it pertains to your child's rights is imperative in getting what you need for your child.   
     
     
     
    Depending on what has already been done, m y understanding of IEE is that you would have to allow the SWAAC team to do an assessment.  If you did not agree with the assessment results, you can request an IEE.  The IEE is then paid for by the district.  They can provide you with some providers for the IEE (that may have contracted with the district in the past) but you do not have to use their providers.  (You would have to find a provider that would agree to contract with your district.)  No district is required to accept the results of outside providers (at anytime)  but, if they pay for the IEE, it is more likely that they may accept some or all of the results.
     
     
     
    You could also consider mediation or an IEP meeting.
     
     
     
    An attorney can help you navigate the specifics of your situation based upon the history you have and address the immediate issue of daily communication via the right method - IEE, assessment, mediation, IEP meeting, etc.. .
     
     
     
    IMHO, it is very difficult to find the right attorney or advocate but once you have the right person on your team who can navigate the law (and how it has been applied/interpreted by the state and federal courts) , it makes a world of difference.  
     
     
     
    Dawn
     
     
     
     
     
     
     
    ----- Original Message -----
     
     
    From: Mcda...@aol.com
    To: aacpa...@googlegroups.com
    Cc: ann...@gmail.com
    Sent: Tuesday, November 5, 2013 8:04:13 AM
    Subject: Re: School Unsupportive of AAC Device
     
     
            Hi,  something similar happen to us years ago.  Ask them if they have people sign a release for electric wheel chairs or hearing devices ETC?  Are they afraid your child will have seizures or are they afraid other students in her class will have them from her eyegaze device?  We ended up filing for due process because they said our son couldn't use his SGD in the preschool setting.  Our school district paid for the warranty for the device and we were told if it was broken during school time their insurance would cover it. 
     
        What state are you in?  In our state of Massachusetts (home of the World Series Champs the Boston Red Soxs) You don't have to state a reason for an IEE.  I would assume some you consulted outside said she should use an eyegaze right?  Are they refusing to accept that.....sounds like it but just want to make sure.  Keep us all posted and hopefully others will reply that are much better educated then I am about this. 
     
    Mary-Clare
     
     
    In a message dated 11/5/2013 9:41:34 A.M. Eastern Standard Time, ann...@gmail.com writes:
     
     
    Need help!
    I have an  eyegaze device that school is unsupportive of me bringing to school.   They want me to sign a waiver of liability should anything happen it they are not liable and they are contacting my Neurologist because they claim it induces seizures (there has been no evidence of that)  I want to request an outside AAC eval (their AAC is in house within district). Again we finally got the device and now I'm still having to battle for support at school! Need ideas justifying outside AAC eval.  Not willing to set my daughter up for failure with a team that doesn't believe in her.  You would think saving the school district $20,000 and obtaining my own device would be a good thing.  Apparently not. Thoughts??
     
     
     
    --
     
    ***What is Rett Syndrome? Watch this video.  http://youtu.be/bBfPG2aQflE
     
    ***Want to make a difference for millions of girls? Visit  http://www.mikyla-cure.org/
     
    --
    You received this message because you are subscribed to the Google Groups "AAC Parents" group.
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    For more options, visit https://groups.google.com/groups/opt_out .
     
     
     
     
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    Weerunskids <weeru...@aol.com> Nov 05 10:56AM -0500  

    The school system is required by the federal government to either provide device OR warranty for family provided device. We had the exact same fight with our daughters school .....when I get home I will send you the law information that states the school requirements.
     
    Merlie
     
     

     

    Chris and Vicky Opipari <cvop...@gmail.com> Nov 05 09:01AM -0700  

    Has the in-house AAC done an AAC eval? If so, then you can disagree with
    their finding and ask for an IEE. FAPE (Free Appropriate Public Education)
    is key and if what they are providing for your daughter is not appropriate
    for her needs, then you have every right to disagree and ask for the IEE.
     
    By the way, why is the AAC not wanting to support the eye gaze device?
    It's always good to understand where they are coming from - do they not
    know the device and don't want to look incompetent or they're scared of it?
    Sometimes finding solutions and letting them know you'll work with them
    rather than fighting can be more conducive to getting what you want for
    your student. It sounds like there is a lot of fear involved on the
    district's part.
     
    A lot of schools are concerned when an expensive device gets brought in
    because they cannot insure it, and they are worried if it gets damaged then
    they will get sued.
     
    Do you have an outside therapist working with your daughter on using the
    device? If so - they might be a good resource for the school and a good
    way to provide data to the schools that it is appropriate for your daughter.
     
    Vicky
     
     

     

    Weerunskids <weeru...@aol.com> Nov 05 11:01AM -0500  

    Mary-Claire was extremely helpful to our family years ago when we fought the school system about Jessie's device. So glad we are done with battling school now that our daughter is an adult.
     
    Merlie
     
     

     

    Mcda...@aol.com Nov 05 11:34AM -0500  

    Merlie.........you have been on my mind so much lately with the Red Sox
    winning! Thank you for your kind words......everyone keep me in your
    thoughts and prayers as the SD again filed DP against me for keeping Lee
    eligablitable for special education services.......yes you read that right! I did
    it pro se.......now writing up the closing arguments! Due Monday of
    Thanksgiving week............M-C


    In a message dated 11/5/2013 11:01:42 A.M. Eastern Standard Time,
    weeru...@aol.com writes:
     
    Mary-Claire was extremely helpful to our family years ago when we fought
    the school system about Jessie's device. So glad we are done with battling
    school now that our daughter is an adult.
     
    Merlie
     
     
     
     
    On Nov 5, 2013, at 10:38 AM, Dawn Caldwell <_dcald...@comcast.net_
    (mailto:dcaldw...@comcast.net) > wrote:
     
     
     
     
     

    How old is your child? What was your child using before at home and at
    school? What is in the IEP? Why is the issue cropping up now - school has
    been in session awhile. Did you just get the device? Is this a new school
    for your child? Was the team aware that you were purchasing this device?
    Did you coordinate a training plan with the AAC person for the school team?
    How high up the chain of command have you gone?
    I would suggest you contact an attorney familiar with IDEA and your state
    as daily communication is vital to education. The Peak Parent center
    (_www.peakparent.org_ (http://www.peakparent.org/) ) is also a good resource
    (Shirley Swope). Either one should be able to provide you with the IDEA law
    that supports AAC use and a school's responsibilities. Knowing the law as
    it pertains to your child's rights is imperative in getting what you need
    for your child.
    Depending on what has already been done, my understanding of IEE is that
    you would have to allow the SWAAC team to do an assessment. If you did not
    agree with the assessment results, you can request an IEE. The IEE is then
    paid for by the district. They can provide you with some providers for
    the IEE (that may have contracted with the district in the past) but you do
    not have to use their providers. (You would have to find a provider that
    would agree to contract with your district.) No district is required to
    accept the results of outside providers (at anytime) but, if they pay for the
    IEE, it is more likely that they may accept some or all of the results.
    You could also consider mediation or an IEP meeting.
    An attorney can help you navigate the specifics of your situation based
    upon the history you have and address the immediate issue of daily
    communication via the right method - IEE, assessment, mediation, IEP meeting, etc...
    IMHO, it is very difficult to find the right attorney or advocate but once
    you have the right person on your team who can navigate the law (and how
    it has been applied/interpreted by the state and federal courts), it makes a
    world of difference.
    Dawn
     
     

    ____________________________________
    From: _Mcda...@aol.com_ (mailto:Mcda...@aol.com)
    To: aacpa...@googlegroups.com
    Cc: ann...@gmail.com
    Sent: Tuesday, November 5, 2013 8:04:13 AM
    Subject: Re: School Unsupportive of AAC Device
     
    Hi, something similar happen to us years ago. Ask them if they have
    people sign a release for electric wheel chairs or hearing devices ETC? Are
    they afraid your child will have seizures or are they afraid other students
    in her class will have them from her eyegaze device? We ended up filing
    for due process because they said our son couldn't use his SGD in the
    preschool setting. Our school district paid for the warranty for the device and
    we were told if it was broken during school time their insurance would cover
    it.

    What state are you in? In our state of Massachusetts (home of the
    World Series Champs the Boston Red Soxs) You don't have to state a reason for
    an IEE. I would assume some you consulted outside said she should use an
    eyegaze right? Are they refusing to accept that.....sounds like it but just
    want to make sure. Keep us all posted and hopefully others will reply
    that are much better educated then I am about this.

    Mary-Clare


    In a message dated 11/5/2013 9:41:34 A.M. Eastern Standard Time,
    _ann...@gmail.com_ (mailto:ann...@gmail.com) writes:
     
    Need help!
    I have an eyegaze device that school is unsupportive of me bringing to
    school. They want me to sign a waiver of liability should anything happen
    it they are not liable and they are contacting my Neurologist because they
    claim it induces seizures (there has been no evidence of that) I want to
    request an outside AAC eval (their AAC is in house within district). Again we
    finally got the device and now I'm still having to battle for support at
    school! Need ideas justifying outside AAC eval. Not willing to set my
    daughter up for failure with a team that doesn't believe in her. You would
    think saving the school district $20,000 and obtaining my own device would be a
    good thing. Apparently not. Thoughts??
     
     
     
     
    --
    ***What is Rett Syndrome? Watch this video. http://youtu.be/bBfPG2aQflE

    ***Want to make a difference for millions of girls? Visit
    http://www.mikyla-cure.org/
     
     
    --
    You received this message because you are subscribed to the Google Groups
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    (mailto:aacpa...@googlegroups.com) .
    Visit this group at http://groups.google.com/group/aacparents.
    For more options, visit https://groups.google.com/groups/opt_out.
     
     
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    Weerunskids <weeru...@aol.com> Nov 05 11:56AM -0500  

    If there was ever a parent who could make the system sit up and take notice it would be you! Sending positive thoughts your way.
    BTW are you on Facebook? Look me up on there so you can see how we made Jessies wheelchair into a Harley Davidson for Halloween ..... She had the leather jacket and even a leather skull cap lol
     
    Merlie Jackson
     

     

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--
***What is Rett Syndrome? Watch this video.  http://youtu.be/bBfPG2aQflE
 
***Want to make a difference for millions of girls? Visit  http://www.mikyla-cure.org/

weeru...@aol.com

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Nov 6, 2013, 11:01:08 AM11/6/13
to aacpa...@googlegroups.com
When battling with our daughters school about her bringing and using her device in school this supported our efforts to REQUIRE them to provide warranty coverage AT THEIR expense ....hope it helps another family.
 
 
 
Merlie
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