Tuesday, September 27, 2011

Did I Speak Too Soon?

I may have spoken too soon about the success over Makenzie's IEP.

I did not speak too soon about how wonderful her aide is..... she is abosolutly amazing and I am so happy that God put her in our paths! She believes in Makenzie and so excited to see her everyday! She has already gone above and beyond for my girl. Today she was so excited to tell me that Makenzie knew the letter "H". She tried to "trick her numerous times and no matter what she did Makenzie was able to identify "H" every time!!!! Go Makenzie!  I can tell her aide is so invested in teaching Makenzie because she believes she CAN learn! What a blessing!

I did not speak to soon about how well Makenzie's goals where written. We finally have an IEP the holds the school accountable to teach Makenzie specific things and most of these things are very similar to what all of the other kindergartners will be learning this year.

I did not speak to soon about how wonderful the staff is. The special ed teacher is very kind and receptive. She has also bent over backwards to help get Makenzie in school this year. The nurse is very proactive and on top of all of the things both of my kiddos have needed thus far. The principal is very present at the school. He is always available to talk and I have yet to see him without a smile. He is very patient and has made me feel very good about this transition. The teachers are also amazing. I have yet to walk by an employee who does not know my daughters name. We have been greeted in the halls with so many smiles and much interaction from all of the staff whether they work with Makenzie or not! This school is truly and amazing place!

However there is still one nagging issue. The talker.

Last week I was told that within four weeks Makenzie would have a talker to use at school. Today that story has changed. Now I am being told that Makenzie will go no longer then four weeks at a time without access to a talker. In other words they want to get loaners for Dynavox and when the loan period is over and they have to send it back they will have four weeks to get another loan.

Now this plan is ok with me as long as all of the other children's mouths are duct taped shut for the time Makenzie is without a talker. I mean a lite tech system should be ok right? It is only for the times when they can't use their voice and I am sure their parents will be fine with this plan too. I really think the whole class could get really good at charades during this four week period several times a year.

So this morning we sat with the speech therapist on the phone trying to work this out. We tried to come up with a plan. No can do. Everyone in the room played dumb. I quoted IDEA and they twisted it. I am not sure if the two district staff members who were there really had no clue but I doubt it.

Here is what the law says.

IDEA 2004

“The purposes of this title are to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.” (Section 1400(d)(1)(A))

§300.5 Assistive Technology device
                        Any item, piece of equipment, or product system, whether acquired
                        commercially off the shelf, modified, or customized, that is used to
                        increase, maintain, or improve functional capabilities of children with
                        disabilities. (Authority: 20 U.S.C. Chapter 33, Section 1401 (25))

§300.6 Assistive Technology service
                        Any service that directly assists an individual with a disability in the
                        selection, acquisition, or use of an assistive technology device. Such
                        terms include:
                        (A) the evaluation of needs including a functional evaluation, in the
child’s customary environment;
                        (B) purchasing, leasing or otherwise providing for the acquisition of
                        assistive technology devices;
                        (C) selecting, designing, fitting, customizing, adapting, applying,
                        maintaining, repairing, or replacing of assistive technology devices;
                        (D) coordinating with other therapies, interventions, or services with
                        assistive technology devices, such as those associated with existing
                        education and rehabilitation plans and programs;
                        (E) training or technical assistance for an individual with disabilities,
                        or where appropriate that child’s family; and
                        (F) training or technical assistance for professionals (including
                        individuals providing education and rehabilitation services), employers
                        or others(s) who provide services to employ, or are otherwise,
                        substantially involved in the major life functions of children with
                        [Authority 20 U.S.C., Chapter 33, Section 1401(26)]

I am sure that for most of you that is a lot of blah, blah, blah. However for me it is a standing point because I now hold in my hands the recommendations that came from the AT evaluations that we have done with Makenzie in order to determine her need for Assistive Technology at school. 

According to IDEA the school is now responsible for providing a talker for Makenzie to use at school. This one report is the bread and butter of our case should this head to due process. I really hope we can get this last issue resolved without lawyers and court costs. 

At the end of the day I would rather not know exactly where to find all of this blah, blah, blah. I wish I could say I haven't read all of the IDEA from beginning to end.

I just want Makenzie to learn and grow. I want to give her as many skills as possible to navigate this world with! I just want these people to provide what they are obligated to provide to help Makenzie reach her full potential. 

What is needed today from what I know about Makenzie as her mother and according to the district after careful evaluation is a " Dynamic display synthesized communication device with eye gaze access"

I really, really, really do not want to add Due Process to my resume. 

Believe.... Prayer Works!


Beth said...

The public school system does not want to spend money. That is the plain and simple fact. they will fight you tooth and nail while trying to look like they are doing something. Personally, I have found that they move much faster when you involve a lawyer. Do you have an attorney that you trust. I once sent an email to everyone I knew that was invloved including every school board members and simply cc'd my attorney and the school district sat up, took notice and made changes within 48 hours. My attorney did not charge me for cc'ing her so I got things done without it costing me a cent.
The disrtict would much rather buy your daughter the equipment than face the lawsuit you can bring on them if they don't. They are betting on their knowledge vs. yours and they know involving a lawyer is going to lose them money.
The school district absolutely does want to help you and your child but they've been told to cut costs. They have probably become well versed in giving parents the run around.
My advice is to retain a lawyer and let the district know you mean business.

Vicky said...

Hi there,

I recently had similiar experience - except my daughter is in high school !
I had paid to have her communciation abilities independently tested last year and had been recommended a communication device. The Dpt of Education were not convinced or were not doing anything about it.

So after several months I bought a second hand dynavox off ebay - ( with lots of help from Gina ) for a mere $ 750.00.

Since then Courtney has shown them that she can do it and at that point I tried to get a device more suitable as the dynavox is really bulky and was not as functional for Courtney as the ipad with specilised software ( as I subsequently took her to a training day for ipads and discovered she could use them ).

So the school was going no where with my requests and neither were they embracing the dynovox. I also had a whole range of issues that were annoying me, so I
wrote a lovely 4 page letter to the ministers of education, disablities and various other things expressing my concerns and amongst this was the problems with the education department.

I am pleased to say that we now have a whole team of people developing Courtney's ILP ( as we did not have one ! ) and we also got a new ipad2 last week, complete with the programs we need - amazing it just happened - after one letter and a few heated phone conversations which led to the meeting. ( Gina would be very proud ! )

Anyway - can I suggest that you write down you complaints and sent it to the very top - they have to action it.

Also if you are after a dynavox I would be happy to sell you our one at a very reduced rate. It all works and I think that you can get it adapted for eye gaze. At least if you get something up and running it can show them that you are serious about making it happen. It will give your daughter a chance to show them too.

Let me know if you are interested and good luck with it all.


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