From: Jeff Grisamore
Sent: Wednesday, January 14, 2009 11:57 PM
To: _Republican Representatives; _Republican LAs & Staff; _Democrat Representatives; _Democrat LAs & Staff
Subject: Insurance Coverage for Autism--Invitation for Co-Sponsors by 12 Noon on Thursday, January 15th
On January 15th, I plan to file legislation which requires insurance coverage for the diagnosis and treatment of autism spectrum disorders. While I filed similar legislation last year (HB 2265) that was heard and passed out of the Health Care Policy Committee nearly unanimously—and was covered by the NBC Today Show—this year’s bill is enhanced by the collaboration of various autism groups, including the Thompson Center, Judevine, Autism Speaks and many other member groups of the Missouri Autism Coalition. Representative Scharnhorst and I had the privilege to address that coalition in November at their Summit in Jefferson City. There has also been dialogue with insurance companies toward the development of this bill.
Senator Scott Rupp, the Chair of the Missouri Autism Commission, has filed a Senate version of this bill and the House version I am filing is identical. Senator Rupp has encouraged me to file a House version of the bill. To review this bill in its Senate version, go to: http://www.senate.mo.gov/09info/bts_web/Bill.aspx?SessionType=R&BillID=533846.
Last year I sponsored a House bill to establish the Missouri Commission on Autism Spectrum Disorders and Senator Rupp’s version of a similar bill became law to establish the Commission that first convened last fall. Fighting and advocating for individuals with disabilities—especially autism—is among my highest legislative priorities.
With autism having reached pandemic proportions, increasing in incidence from 1 in 10,000 to 1 in 150, nearly 10 states have passed similar legislation into law and dozens more have it in the pipeline. Autism is one of 12 neurological disorders and it is the only one of the 12 that is excluded from insurance coverage.
I believe this is gross discrimination and is an emerging civil rights issue of our day. Research from other states and actuaries shows that such legislation would only raise premiums by an average of less than one half of one percent. While I normally oppose mandates, we already have more than 50 health care related mandates in Missouri law. This is one more we must pass.
This proposed law was a recommendation of the Missouri Blue Ribbon Panel on Autism. My passion is driven by my deceased daughter, Rebekah, whose organ and tissue donation has benefited Prader-Willi Syndrome and autism research. Freshman Senator Eric Schmitt also has a son with autism and Representative Scharnhorst lost a grandson who had autism.
As the Speaker, Pro Tem and Governor are all calling for bi-partisan cooperation, this bill to give families of children with autism access to insurance coverage is a great opportunity to pursue bi-partisanship.
If you would like to co-sponsor this bill, please reply by noon on Thursday, January 15th. Thank you!
Respectfully,
Jeff Grisamore, District 47
P.S. If you would like to view a video of our press conference on last year’s autism insurance bill, please go to: http://www.youtube.com/watch?v=LaNkuZ-ooEc
He must have ran out of time because he didn't file this bill. Someone else did.
HB 79 - HEALTH INSURANCE COVERAGE FOR AUTISM - Lampe, Sara
House Home Page.
House Bill List.
HB 79. Requires health benefit plans to include coverage for the treatment of autism spectrum disorders.
Sponsor:. Lampe, Sara (138).
Proposed Effective Date:. 08/28/2009.
Last Action:. 01/08/2009 - Read Second Time (H). HB79.
Next Hearing:. Hearing not scheduled.
Calendar:. Bill currently not on a calendar.
Bill Text for HB79. http://www.house.mo.gov/billtracking/bills091/bills/hb79.htm -
Last Modified: 1/20/2009 8:52:12 PM
I thought that I had already seen this bill. Sara Lampe filed it. Not Jeff Grisamore.
HB 79 -- Health Insurance Coverage for Autism Spectrum DisorderSponsor: Lampe
This bill requires all health insurance carriers to providecoverage to their members for autism spectrum disorder treatmentsby January 1, 2010. Insurers are prohibited from denying coverage to individuals who are diagnosed with the disorder.Deductibles, co-insurance, and benefit limits for the disorder cannot exceed those assessed for a general physical illness under the health insurance plan.
Coverage for the disorder:
(1) Can be subject to exclusions and limitations such as coordination of benefits, provider requirements, restrictions for services provided by family members, and reviews of necessity for services being utilized;
(2) Will be limited to the treatment plan prescribed by thetreating physician, and insurers can request a copy of the treatment plan every six months;
(3) Will be provided for individuals who are diagnosed with the disorder prior to turning nine years of age, and eligible individuals can receive plan benefits and coverage until they reach 16 years of age; and
(4) Will include behavioral therapies with a $50,000 per year maximum benefit.Certain supplemental insurance policies are exempt from the provisions of the bill including life care contracts and accident-only, specified disease, hospital with a fixed daily benefit, Medicare supplement, long-term care, short-term major medical of six months or less, or any other supplemental policies.
Wednesday, January 21, 2009
Wednesday, October 22, 2008
Why Parents Can't Be An Equal Part Of The IEP Team
My school district will not allow the tape recording of meetings. I feel as though they use that to their advantage. If you are doing everything legal, what do you have to worry about? It would protect both sides. Below are examples of meeting notes and my notes. I was recently told, "You also asked about your notes being added to our Conference Notes. Our Conference Notes are the school district's record of the meetings. Your communications with us are placed in Jacob's SPED folder"
My notes:
I wanted to write a letter of understanding to make sure that we all agreed on the meeting of August 27th. If you have any corrections please let me know within 10 days.
The Agenda was as follows:
AGENDA - JACOB TUCKER IEP - AUGUST 27, 2008, 2:45 TO 3:30
-Introductions
-Parental request for changes to IEP
-Transition to new classes
-Schedule meeting to write reevaluation plan
Introductions were made. I was not given a list of the participants and was only able to make a very crude listing of who was in attendance. There was no written attendance list filled out.
I sent the following request to the district asking for changes to Jake's Present Level of Academic Achievement and Functional Performance
During the IEP meeting we discussed that Jake's short term memory was not just information that the parents shared from outside testing, but it was also very apparent from the district's testing as well. When I received the IEP it stated that "Parents share that outside testing also indicates learning disabilities in written language, short-term memory, and theory of mind. Teachers observe short-term memory weaknesses in the the classroom also." That is not what we agreed upon and it is not completely accurate. The district's tests also show a weakness in short term memory and we agreed that the Present Level would state that. Also, the reason that district tests do not show that Jake has a weakness in written language is because I gave permission for Jake to be given the OWLS test and the district gave him the CASL test. If the district had given him the OWLS test they would have the results that show that Jake has a written language deficit and that it needs to be addressed.
The present level also states that Jacob has shown improvement initiating, maintaining, and ending conversations appropriately, as well as identifying the emotions of others. Later on the same page it states that Jacob has difficulty joining in appropriately with peers to participate in conversations, understanding how to reciprocate with peers, It also states that Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
Class participation, staying on task, understanding and following instructions, completing and turning in work on time, organization, self-advocating for make-up work, taking notes, expressing himself through lengthy forms of written expression, test-taking skills, understanding the emotions of peers and teachers, and general social skills.
Jake's psychiatrist and I do not believe that Jake has made any progress in the area of conversations or in identifying the emotions of others. Jake's psychiatrist has a practice of teenagers with autism and it is his opinion that Jake is not on the high end and that he is too affected by his autism to be able to be doing what the present level states.
I would like the sentence, "His forgetfulness or memory is reported to also be affected by inattention." That leads to the impression that he does not have an issue with his short term memory. I have stated above why I believe that he has an issue with short term memory and I believe that his IEP needs to address this fact.
Under Assistive Technology you state that Jake has been resistive to carrying the Quick Pad to classes. He did not believe that it worked. It was kept in his 7th hour class and that teacher had to figure out how to use it each time that it was taken out of the closet that it was kept in. Therefore, Jake believed that it did not work. I stated this at the IEP meeting and wish to have that in the present level instead of saying that Jake was resistive to using it. Finally, that same teacher let Jake use a class computer, which I had suggested in middle school, and told Jake that "I have figured out a loophole around your mom's rules." That is unacceptable to me. This same teacher admitted in the IEP meeting that she had said this. Jake came home and told me that I was making things harder for him because that is the impression that he received from this teacher. My advocacy for Jake should never be discussed with Jake without my permission and should never be used as an excuse to find loopholes.
Under strengths it states that Mrs. Tucker shared that she does not feel that Jacob has any strengths. That is taken totally out of context and is completely inaccurate. I was asked what strengths I felt Jake had for his future. I said that he didn't have any strengths that would lead to him living an independent "normal" life. I did state that Jake is great at math and reading. But, he was not given the tools to live within society because the district did not address his social issues when he started in the district at the age of 5. I want that statement removed.
We didn't discuss Goal number 6 at the meeting. It is not appropriate to change that goal without discusses it. Your letter states, "You will notice that Goal 6 form the draft IEP has been changed, because of our discussion on the difficulties with accurate measurement. Instead we will focus on self-advocacy in helping Jacob build better habits in requesting make-up work since it is listed in the present level as one of the ways Autism affects Jacob in the general curriculum."
On the Modifications and Accommodations page I specifically stated that I was not in agreement to As Needed being used. That is defined as to be determined by the special education and/or regular education staff and that is leaving an important party out of the decisions. I do not believe that it is appropriate to use that term on this IEP.
Under Regular Education Participation it states that Jake is rejected from less restrictive options because of lack of previous progress in regular education with modification, and with the use of supplementary aids and services. Jake has not received services or modifications. What does this mean? It also states that student's diverse learning styles require alternative instructional environment and Jake is in a regular education classroom. Finally, it states that student requires highly structured, small-group setting, and individualized instruction. Once again, this is not taking place. Jake is in a classroom of over 25 students with two teachers. That is not small group or individualized instruction.
Finally, we discussed a social skills class and my psychiatrist and I believe that it is totally inappropriate for Jake. He requires one-on-one instruction from a person that is HIGHLY trained in his disability. It is necessary for the person that is giving Jake services to COMPLETELY understand his disability so that they can understand the difference between one sided conversations and real conversations. Jake has made no progress in this area and has very little time left to make some progress.
The following is what we resolved at our August 27th meeting.
The district highlighted two sentences on his present level that state, "expressing himself through lengthy forms of written expression," and "writing/editing and writing complexity". These are under Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
The district said that they believed that addressed Jake's written language deficit and asked if I agreed. I said that I didn't, but we would be retesting Jake soon and it would all have to be rewritten anyway, so I would leave it for the sake of argument.
As for Jake's short term memory issue, they added a sentence that stated "District testing also indicates short term memory weakness."
They removed the statement "His forgetfulness or memory is reported to also be affected by inattention.
As for the issue about the assistive technology, they added a sentence that stated, "Mrs. Tucker believes that this was because he believed it did not work."
I told the team that I disagreed with that statement. The device didn't work in Jake's mind and that's why he didn't want to use it. He was not resistive to carrying the Quick Pad to classes. He was resistive to working with a machine that didn't work. The team refused to take that out. I was told that I am the expert on Jake at home and the district is the expert on Jake at school.
I would like to state that I find that offensive and incorrect. If the district was an expert on Jake at school all of his teachers would be HIGHLY trained in his disability. I wouldn't have to go to meetings and explain Jake's actions, issues, etc if the team at school was an expert on my son. If the team were an expert on my son, they wouldn't have put him into a class that A) he was not qualified for and B) was totally inappropriate for a student with autism. If the team were an expert on my son they would not have recommended an art class for a child with dysgraphia or a music class that he surely would have been overwhelmed in. This is not the first time that the team has suggested a class that was totally inappropriate for Jake. It was disastrous before and I'm quite sure that it would have been again if Jake had qualified for the 1st hour class.
Under strengths it stated that Mrs. Tucker shared that she does not feel that Jacob has any strengths. That was changed to "Mrs. Tucker feels that Jacob does not have any strengths that would lead to him living an independent "normal" life. She does feel that he is great at math and reading."
Under reasons for rejection of less restrictive options:
The following were removed:
Lack of previous progress in regular education with modifications, and with the use of supplementary aids and services. Jake has only bee in regular education with no modifications, so that statement was completely inaccurate.
Requires highly structured, small-group setting, and individualized instruction. While that would be the ideal setting for Jake it was rejected and has not been offered. I was told that Jake's only options were regular ed or life skills.
The following were left and other was modified:
Student's diverse learning styles require alternative instructional environment.
Other: Highly structured small group setting helpful one period per day to assist with organization support reg ed coursework. I would like to know the teacher to student ratio in that class. Also, I would like to know if that teacher has been trained in autism and all that it entails.
We did not discuss goal number 6.
We did not discuss what social skills training Jake would receive and if that person would be highly qualified to work with Jake.
We finally discussed the accommodations for Jake. I do not like to use the term "AS NEEDED". On the sheet it states, "AS Needed is defined as to be determined by the special education and/or regular education staff." We have already determined that the staff is not highly trained in Jake's disability and to leave such a decision up to them would be neglectful.
Small group testing was changed to "Access to small group testing with rephrasing of directions." We had a very long discussion on what that meant. Joy Rose stated, "Historically Jake has refused to take tests in a small group and it resulted in meltdowns and shutdowns." I would like to know where that information came from because it is totally inaccurate and should not be in Jake's file.
Jake always took tests in small groups at Prairie View. It was no big deal and it lead to higher test scores. When he entered Pleasant Lea they did not give him tests in small groups. His IEP stated that they were supposed to. Then they finally agreed to do it, but they asked if him if he wanted to. Most times he said no. That is not a refusal. That is a child being given a choice and choosing.
Had the district implemented his IEP throughout his ten years in this district, this would not be an issue right now. I have no problem with Jake taking tests in the classroom as long as he understands what the test is asking of him and he is able to take it. Making a child sit in the hallway is not my idea of small group testing and that is what has been offered on more than one occasion.
We discussed that Jake has been tardy to a few classes, but that the teachers haven't marked him tardy. Jake does not visit in the halls or play around. He simply walks from class to class and sometimes the distance is too far for him to make it in time. Allow to leave class few minutes early was changed to daily for that reason.
We discussed Jake's issues with school and how much he hates it. I told the team that he is under a great deal of stress just coming to school. It overwhelms him. He can't sleep at night. These are characteristics of most children with autism and it is another example of how the district is not an expert on Jake.
Jake is having some issues in math. The teachers say that he is refusing to work. I talked with Jake and he told me that he is so tired he just can't concentrate. We will speak to his psychiatrist about the stress and lack of sleep.
We are scheduling evaluations for Jake to be done in October. I sent a list to the district that was given to me by an expert in educational testing. The district didn't agree to those tests yet and stated that they couldn't give him a test that they don't already own. It was stated that Jake didn't need an IQ test because they already know that he is smart. I disagree and feel that past testing by the district has been incomplete and didn't find the deficits that he has and that his education has suffered from it.
Thanks for meeting with us and for the opportunity to meet Jake's teachers and try to give them a better picture of Jake.
Their notes:
Psychiatrist appointment Sept. 17. On clinical trial until this date then starts seeing psychiatrist on patient bases. Another appointment in October.
Joy went over Notice of Action which shows changes being made to IEP.
Taking off abilifymedication Sept. 17. He will have more anxiety. Will be off of for at least a 3 week trial. The team agreed that it would not be in Jake's best interests to write a reevaluation plan and pull Jake out of classes for testing right after the time his meds.
Change Sept. 17. Joy Rose told Mrs. Tucker that she would e-mail her a list of some dates that could be options of times to meet towards the beginning of October.
Curtis wants to know what reeval. is about. We do 7 areas. Test that will give us information for programming.
Specific testing in email. Is that the whole list? No. Joy told Mrs. Tucker that the district doesn't have to go out and buy specific tests if we have something comparable.
We will look at areas that need to be measured. Written language seems to be big concern for Sherri. Joy Rose told Mom to send any more specific requests to her so that she can check to see if we have that instrument or something comparable before we meet to write evaluation plan.
Parents given copy of Procedural Safeguards and Notice of Action.
Teachers were told that a copy of Amended IEP would be in their mailboxes in a day or two to replace the original IEP with.
Math teachers shared some concerns that Jake is verbally negative at times about his abilities and asked parents if they had any ideas as to how to help with this.
Going to do an observation of his route between 1 st and 2nd hr. to see ifhe is taking and knows the shortest route. Allow to leave class few mins. early Daily.
Reasons for Rejection of LRO: See *. Clarified the reasoning behind why he is in a Resource Lab. Parents okay with.
Teachers shared that they have concerns because so far Jake has been unwilling to use his laptop. No long writing assignments have been done. Jake has preferred to handwrite shorter assignments. Parents have OKed that on anything other than lengthy ones. Mr.
Smith said he had a lot of short quizzes in class and family agreed that he could stay in class and write answers unless Jake felt he needed assistance.
We discussed the fact that his unwillingness to use the Laptop is why he does not have his assignments written down. Although this is our goal, team decided to use paper assignment sheet until we can help him form this habit.
Discussed the fact that if Jake is late for class, it is not because he is talking to others in the hallway. So, we will need to cut him some slack.
Joy will make corrections to IEP and get in mail in next few days.
Will use Jacob Tucker Planner Sheet. Teachers fill out. We will look at gradually moving him from this to the planner sheet on his H drive. Folders for each class on his H drive. Check with tech. to see if teachers can put assignments in his H drive.
Get Jake used to using computer and then look at One Note and or other program. Some difficulty and confusion in using One Note.
Sits in the shower at home for 30 mins. after school to unwind.
Teacher provided notes - Jake tends to not pay attention after notes are handed to him in Math. Sherri ask if Jessi was sure he wasn't paying attention? Based on his answers to direction questions he isn't listening. Stacey suggest give him notes with some missing words here and there. Jessi will check with him to see ifhe is hungry. Isn't eating breakfast. He is bringing a snack but not sure when he's eating it. He doesn't see Geometry as math.
Curtis - If you put him on the spot in front of other people he will shut down.
Did very well listening to Peachee in ICP today.
Overall, teachers feel like he has transitioned well to this school year. He is focused and contributes in class many times more than others.
If frustrated or doesn't know what's going on will say he doesn't know what's going on.
Mtg.8-27-08
Present: Joy Rose, Sherrie Tucker, Curtis Tucker, Rick Smith, Stacey Martin, Kim Sterne, Dawn Payne, Cindy Britt, Gerald Clevenger, Jamie Argotsinger, Jessi Ramsey, Janalee Byers, Michelle Rees, Christine Peachee, Duane Fleck, Joyce Jackson, Kelli Wilson, Deanna Thorne
After introductions, Joy Rose shared the agenda and explained that the team would be considering parental requests for changes to be made to the IEP that had been shared with them before school started.
See Draft of Proposed changes for Amendment:
Page 2 IEP last paragraph * written in, yellow highlight on pg. 2 show written language.
He also has 2 written language goals.
Sherri - he definently shows a written lang. deficit. It shows in Present Level.
Sherri - I guess will just wait til you do the right testing this time and it shows up.
Assistive Tech. - Change, been resistive to carrying, to appeared resistive to carrying. Sherri questioned whether or not his appearing resistive to carrying his Quick Pad should be in there since she feels it is only because he didn't believe it worked. Joy Rose told her that we may just have to meet each other half way on this as for whatever reason, our staff observations indicate that he appeared resistant to carrying it.
Sherri believes Jacob does not have any strengths statement changed to reflect for transition., see PLAAFP at bottom.
State/District Assess. Mark out tests red if not measuring reading because of changes to state testing this year. That won't be allowed.
Mods. - Do parents want teachers to push Jacob to small group testing or give him the choice to stay with his class. Mom wants to talk to Jake. She will get back to us.
Small group testing has to do with the noise around him not being sure what he understands what's being ask. Mod's in question were changed to Daily with some change in wording on some. Joy Rose explained to parents that we do not want to frustrate Jacob by forcing him to leave the class for testing ifhe feels that he does not need to go as then he sometimes shuts down. Mr. Curtis agreed that Jacob does not like to have attention drawn to himself.
English - Quizes every Friday. Okay to ask him what he wants to do. Discussed his difficulty explaining how a person felt in a story.
If he takes test/quiz and does fine then okay. Ifhe doesn't do well investigate why. May need small group/indo Retake.
Use computer on extended writing assignments. Anything more than 5-8 sentences.
Dawn Payne ask about some of the work in English. Showed examples. Mom was okay with them.
Special spot in classroom for Jake's supplies - Math is working out well. It's working perfectly.
I
Lee's Summit High School
400 S.E. Blue Parkway Lee's Summit, Missouri 64063-4399 (816) 986-2000 FAX (816) 986-2095
September 5, 2008
Dear Sherri,
In response to your e-mail of August 29, please find attached a copy of our Conference Notes. The participants are listed. Hopefully it will be helpful to you to have to compare with your notes. If you are not comfortable with Goal Number 6 now that you have had time to consider it, please let us know what you would like to see focused upon.
Thank you also for sending us information on the reevaluation you would like to see. We will look forward to seeing you October 6th. Per your request, I will e-mail you our suggestions utilizing your input on an evaluation plan. We can then make the final decisions on areas to be evaluated and instruments to be used as a team when we meet. I might suggest having a smaller team, utilizing the members that are required to be legal, when we write the evaluation plan. I would feel it is more important to have as many of the teachers present as possible when we go through the results of testing and look at the implications for programming. Would you be comfortable with that?
Respectfully yours,
Joy Rose SPED Process Coordinator
My Notes:
I would like to make sure that we all have a clear understanding of the meeting that took place yesterday. It was scheduled on September 19, 2006. The attendees were Sherri Tucker, Diane Stark (sister of Sherri and employee of Children's Mercy Hospital since 1981), Todd Wilson, Kim Berkstresser, and Suzanne Vleisides. Jannette Cooley
attended half of the meeting. I need a copy of the schools' minutes for this meeting. Please correct me on any items that I am mistaken on.
The meeting was called to discuss the modifications that should be made to Jacob Tucker's IEP. He has modifications in every class and his mother felt that he needed modifications in PE. She has done a great deal of research on this subject and has offered the information to all that were involved in this meeting, with the exception of Ms. Cooley.
I began the meeting by reading some information that had been given to me by a specialist in AS. I wanted the team to be privy to knowledge that I had gained in the hours prior to the meeting. I also stated that I had spoken with many parents of children in middle school with AS.
I read the following: "Jacob is challenged every single day. Physically, socially and mentally. Jacob also needs a different kind of preparation for the world outside of school. Most AS kids live outside their comfort zone just by virtue of walking into the school building."
I also told everyone that Jake's psychologist has determined that Jake has anxiety issues and they are mostly due to school.
There was some more conversation and it there was a lot of back and forth about autism. I don't believe that Mr. Wilson is very knowledgeable about autism. That is the impression that I got.
I believe that Mr. Wilson then stated that he did not believe this to be the case and that he knew Jake better than any "What do you call it? AS?" specialists. I believe that he then said that he still do not believe that Jake was suffering from anxiety. I explained that Jake's anxiety was not detectable to him because he is autistic and doesn't act the same as "normal" kids.
Kim and Suzanne were very good at facilitating the meeting. They kept asking what modifications needed to be put into Jake's IEP. I stated that I did not want Jake to have to run laps. He had been punished for not running laps the prior week.
Mr. Wilson stated that Jake was not punished for walking he was punished for not running the last 20 feet when he was instructed to. I asked Mr. Wilson what he told Jake. He stated that he told Jake and two other kids that they needed to "hustle" on the last 20 feet. He said that he punished Jake for not following instructions and that he felt that Jake needed to be punished.
I explained that Jake is autistic and he takes things literally. "Hustle" does not mean run to Jake. I'm not even sure
that he knows what it means. I told him that Jake thought that he was being punished for not running all of the laps. He did not understand that he was being punished for not "hustling" and was probably not even sure what was being asked of him.
I went on to explain to Mr. Wilson that AS kids have difficulties with motor skills. He stated that he disagreed and that he knew more about Jake's abilities than I do.
Somewhere during this conversation Ms. Cooley arrived in the meeting. There were many conversations going back and forth and I can't recall every one. I will request that future meetings be recorded.
We finally got back down to discussing the modifications. There was some confusion as to what to put into the IEP. I stated that I had hoped that the team would have some suggestions and felt that the PE teacher would be the best person to come up with some of these, but it appeared that the PE teacher didn't feel that modifications were warranted and that I would need to do some more research on my own time.
We did decide that Jake should not have to run laps. It got pretty technical and there was discussion as to whether he should run during basketball, etc. It was finally decided that Jake would not have to run laps or long distances.
I believe that Mr. Wilson asked how that would be handled and if he would say to all of the kids "You all have to run, but Jake you can walk." He also stated, "What happens if Jake accidently runs? Am I going to get into trouble for that?"
Kim, Suzanne, my sister, and I all stated that it would be great if Jake ran, but that he doesn't have to. I stated that I didn't want there to be any question about whether Jake had to run or not and that's why I wanted it in black and white. I didn't want to depend on the teacher to make a decision for a child that has a disorder that he clearly doesn't understand.
Mr. Wilson brought up an email that I wrote to him last year. He had emailed me the above and I responded in a positive way. We had so many issues with Jake last year that I didn't want to add to it. I responded in a kind and positive way to Mr. Wilson in hopes that he respond in the same way to Jake.
We discussed how Jake loved PE in elementary school and felt that Mr. Bishop hung the moon. I said that I agreed with that statement. Mr. Bishop is an excellent teacher and beyond that a wonderful and caring human being.
Mr. Wilson said that he felt that Jake liked him and had never appeared to be upset. I explained that Jake is autistic. He doesn't dislike people. He doesn't see the good or bad in people. He may be stressed by an activity, but not by the person making him do it.
Mr. Wilson asked me if I would be telling Jake that he didn't have to do anything he didn't want to in PE. I told him that what I discuss with adults is not the same as I what I tell Jake. I told that I would never go home and say "That person is mean." I will simply tell Jake that he needs to do his best and if he can't run then walking would be acceptable.
It was my feeling that Mr. Wilson was not on board with Jake having modifications. He continued to assert that Jake was up to the challenge of PE. I continued to assert that Jake is not a "normal" child and that he is not.
My sister brought up the fact that Mr. Wilson stated that my son lied. Mr. Wilson corrected her and said that he purposely stated that he didn't lie. So, we agreed that he stated that he slanted the truth. My sister stated that Mr. Wilson stated that Jake might be doing this in all of classes. She asked him how many of Jake's classes he had been in.
My sister brought up the fact that Mr. Wilson had addressed Jake's need for a healthy diet at home and that he felt that Jake needed to drink less pop at home so that he could get to sleep. Mr. Wilson agreed that I had sent him an email explaining that children with AS have sleep issues and that it has nothing to do with diet or pop consumption.
Mr. Wilson at first stated that Jake told him that he drinks pop before he goes to bed. He then stated that Jake drinks 3 or 4 cans of pop before he goes to bed. I explained to Mr. Wilson that he asked Jake if he drinks pop and Jake answered yes. Once again, I explained to Mr. Wilson that Jake is autistic and will only respond to a direct question. If he had asked Jake what time he drank that pop and how much, Jake would have answered that. Jake only told him that he drank pop.
I said that perhaps I should talk to my psychologist and see about having Jake released from PE. I really didn't feel that it was a good environment for Jake and I would not allow us to go back to where we were last year.
Ms. Cooley stated that she didn't want me to discuss last year anymore. My sister said that I had attended so many meetings last year and nothing was ever fixed.
Ms. Cooley told my sister that discussing last year wasn't going to get us anywhere and that no purpose was served by bringing it up. We need to focus on the positive.
I tried to insert, "If we don't learn from our past we are doomed to make the same mistakes." but I didn't get to finish my thoughts.
We once again discussed the modifications and Kim and Suzanne said that they knew that Mr. Wilson would follow through with whatever we decided. We decided that Jake would not have to run laps or long distances.
We concluded the meeting at that point.
I came home and contacted Jake's psychologist and talked to him about this meeting. We agreed that the atmosphere, in PE, would not be good for Jake's emotional and psychological well being. I told the psychologist that Jake's father would be taking him to the gym three times a week for physical fitness.
I would like to see Mr. Wilson attend a class on autism because I feel that he doesn't understand the disorder and it's impact on the students that he serves.
Their Notes:
Jacob gets anxious from PE he has to run more laps, sit-ups, or push-ups he's going to cause them to lose-all statements from Sherri. There are ways to modify w/out taking him out of PE. the team all agreed. Jake is pushed to the limits getting here Todd said he doesn't want him punished to do something beyond your control. Jacob has never been forced or will be to asked to run an extra lap as punishment following instructions is a concern Long distances Jake will walk rather than run. Jake will be encouraged to do his best but will not be punished for walking.
My notes:
I wanted to write a letter of understanding to make sure that we all agreed on the meeting of August 27th. If you have any corrections please let me know within 10 days.
The Agenda was as follows:
AGENDA - JACOB TUCKER IEP - AUGUST 27, 2008, 2:45 TO 3:30
-Introductions
-Parental request for changes to IEP
-Transition to new classes
-Schedule meeting to write reevaluation plan
Introductions were made. I was not given a list of the participants and was only able to make a very crude listing of who was in attendance. There was no written attendance list filled out.
I sent the following request to the district asking for changes to Jake's Present Level of Academic Achievement and Functional Performance
During the IEP meeting we discussed that Jake's short term memory was not just information that the parents shared from outside testing, but it was also very apparent from the district's testing as well. When I received the IEP it stated that "Parents share that outside testing also indicates learning disabilities in written language, short-term memory, and theory of mind. Teachers observe short-term memory weaknesses in the the classroom also." That is not what we agreed upon and it is not completely accurate. The district's tests also show a weakness in short term memory and we agreed that the Present Level would state that. Also, the reason that district tests do not show that Jake has a weakness in written language is because I gave permission for Jake to be given the OWLS test and the district gave him the CASL test. If the district had given him the OWLS test they would have the results that show that Jake has a written language deficit and that it needs to be addressed.
The present level also states that Jacob has shown improvement initiating, maintaining, and ending conversations appropriately, as well as identifying the emotions of others. Later on the same page it states that Jacob has difficulty joining in appropriately with peers to participate in conversations, understanding how to reciprocate with peers, It also states that Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
Class participation, staying on task, understanding and following instructions, completing and turning in work on time, organization, self-advocating for make-up work, taking notes, expressing himself through lengthy forms of written expression, test-taking skills, understanding the emotions of peers and teachers, and general social skills.
Jake's psychiatrist and I do not believe that Jake has made any progress in the area of conversations or in identifying the emotions of others. Jake's psychiatrist has a practice of teenagers with autism and it is his opinion that Jake is not on the high end and that he is too affected by his autism to be able to be doing what the present level states.
I would like the sentence, "His forgetfulness or memory is reported to also be affected by inattention." That leads to the impression that he does not have an issue with his short term memory. I have stated above why I believe that he has an issue with short term memory and I believe that his IEP needs to address this fact.
Under Assistive Technology you state that Jake has been resistive to carrying the Quick Pad to classes. He did not believe that it worked. It was kept in his 7th hour class and that teacher had to figure out how to use it each time that it was taken out of the closet that it was kept in. Therefore, Jake believed that it did not work. I stated this at the IEP meeting and wish to have that in the present level instead of saying that Jake was resistive to using it. Finally, that same teacher let Jake use a class computer, which I had suggested in middle school, and told Jake that "I have figured out a loophole around your mom's rules." That is unacceptable to me. This same teacher admitted in the IEP meeting that she had said this. Jake came home and told me that I was making things harder for him because that is the impression that he received from this teacher. My advocacy for Jake should never be discussed with Jake without my permission and should never be used as an excuse to find loopholes.
Under strengths it states that Mrs. Tucker shared that she does not feel that Jacob has any strengths. That is taken totally out of context and is completely inaccurate. I was asked what strengths I felt Jake had for his future. I said that he didn't have any strengths that would lead to him living an independent "normal" life. I did state that Jake is great at math and reading. But, he was not given the tools to live within society because the district did not address his social issues when he started in the district at the age of 5. I want that statement removed.
We didn't discuss Goal number 6 at the meeting. It is not appropriate to change that goal without discusses it. Your letter states, "You will notice that Goal 6 form the draft IEP has been changed, because of our discussion on the difficulties with accurate measurement. Instead we will focus on self-advocacy in helping Jacob build better habits in requesting make-up work since it is listed in the present level as one of the ways Autism affects Jacob in the general curriculum."
On the Modifications and Accommodations page I specifically stated that I was not in agreement to As Needed being used. That is defined as to be determined by the special education and/or regular education staff and that is leaving an important party out of the decisions. I do not believe that it is appropriate to use that term on this IEP.
Under Regular Education Participation it states that Jake is rejected from less restrictive options because of lack of previous progress in regular education with modification, and with the use of supplementary aids and services. Jake has not received services or modifications. What does this mean? It also states that student's diverse learning styles require alternative instructional environment and Jake is in a regular education classroom. Finally, it states that student requires highly structured, small-group setting, and individualized instruction. Once again, this is not taking place. Jake is in a classroom of over 25 students with two teachers. That is not small group or individualized instruction.
Finally, we discussed a social skills class and my psychiatrist and I believe that it is totally inappropriate for Jake. He requires one-on-one instruction from a person that is HIGHLY trained in his disability. It is necessary for the person that is giving Jake services to COMPLETELY understand his disability so that they can understand the difference between one sided conversations and real conversations. Jake has made no progress in this area and has very little time left to make some progress.
The following is what we resolved at our August 27th meeting.
The district highlighted two sentences on his present level that state, "expressing himself through lengthy forms of written expression," and "writing/editing and writing complexity". These are under Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
The district said that they believed that addressed Jake's written language deficit and asked if I agreed. I said that I didn't, but we would be retesting Jake soon and it would all have to be rewritten anyway, so I would leave it for the sake of argument.
As for Jake's short term memory issue, they added a sentence that stated "District testing also indicates short term memory weakness."
They removed the statement "His forgetfulness or memory is reported to also be affected by inattention.
As for the issue about the assistive technology, they added a sentence that stated, "Mrs. Tucker believes that this was because he believed it did not work."
I told the team that I disagreed with that statement. The device didn't work in Jake's mind and that's why he didn't want to use it. He was not resistive to carrying the Quick Pad to classes. He was resistive to working with a machine that didn't work. The team refused to take that out. I was told that I am the expert on Jake at home and the district is the expert on Jake at school.
I would like to state that I find that offensive and incorrect. If the district was an expert on Jake at school all of his teachers would be HIGHLY trained in his disability. I wouldn't have to go to meetings and explain Jake's actions, issues, etc if the team at school was an expert on my son. If the team were an expert on my son, they wouldn't have put him into a class that A) he was not qualified for and B) was totally inappropriate for a student with autism. If the team were an expert on my son they would not have recommended an art class for a child with dysgraphia or a music class that he surely would have been overwhelmed in. This is not the first time that the team has suggested a class that was totally inappropriate for Jake. It was disastrous before and I'm quite sure that it would have been again if Jake had qualified for the 1st hour class.
Under strengths it stated that Mrs. Tucker shared that she does not feel that Jacob has any strengths. That was changed to "Mrs. Tucker feels that Jacob does not have any strengths that would lead to him living an independent "normal" life. She does feel that he is great at math and reading."
Under reasons for rejection of less restrictive options:
The following were removed:
Lack of previous progress in regular education with modifications, and with the use of supplementary aids and services. Jake has only bee in regular education with no modifications, so that statement was completely inaccurate.
Requires highly structured, small-group setting, and individualized instruction. While that would be the ideal setting for Jake it was rejected and has not been offered. I was told that Jake's only options were regular ed or life skills.
The following were left and other was modified:
Student's diverse learning styles require alternative instructional environment.
Other: Highly structured small group setting helpful one period per day to assist with organization support reg ed coursework. I would like to know the teacher to student ratio in that class. Also, I would like to know if that teacher has been trained in autism and all that it entails.
We did not discuss goal number 6.
We did not discuss what social skills training Jake would receive and if that person would be highly qualified to work with Jake.
We finally discussed the accommodations for Jake. I do not like to use the term "AS NEEDED". On the sheet it states, "AS Needed is defined as to be determined by the special education and/or regular education staff." We have already determined that the staff is not highly trained in Jake's disability and to leave such a decision up to them would be neglectful.
Small group testing was changed to "Access to small group testing with rephrasing of directions." We had a very long discussion on what that meant. Joy Rose stated, "Historically Jake has refused to take tests in a small group and it resulted in meltdowns and shutdowns." I would like to know where that information came from because it is totally inaccurate and should not be in Jake's file.
Jake always took tests in small groups at Prairie View. It was no big deal and it lead to higher test scores. When he entered Pleasant Lea they did not give him tests in small groups. His IEP stated that they were supposed to. Then they finally agreed to do it, but they asked if him if he wanted to. Most times he said no. That is not a refusal. That is a child being given a choice and choosing.
Had the district implemented his IEP throughout his ten years in this district, this would not be an issue right now. I have no problem with Jake taking tests in the classroom as long as he understands what the test is asking of him and he is able to take it. Making a child sit in the hallway is not my idea of small group testing and that is what has been offered on more than one occasion.
We discussed that Jake has been tardy to a few classes, but that the teachers haven't marked him tardy. Jake does not visit in the halls or play around. He simply walks from class to class and sometimes the distance is too far for him to make it in time. Allow to leave class few minutes early was changed to daily for that reason.
We discussed Jake's issues with school and how much he hates it. I told the team that he is under a great deal of stress just coming to school. It overwhelms him. He can't sleep at night. These are characteristics of most children with autism and it is another example of how the district is not an expert on Jake.
Jake is having some issues in math. The teachers say that he is refusing to work. I talked with Jake and he told me that he is so tired he just can't concentrate. We will speak to his psychiatrist about the stress and lack of sleep.
We are scheduling evaluations for Jake to be done in October. I sent a list to the district that was given to me by an expert in educational testing. The district didn't agree to those tests yet and stated that they couldn't give him a test that they don't already own. It was stated that Jake didn't need an IQ test because they already know that he is smart. I disagree and feel that past testing by the district has been incomplete and didn't find the deficits that he has and that his education has suffered from it.
Thanks for meeting with us and for the opportunity to meet Jake's teachers and try to give them a better picture of Jake.
Their notes:
Psychiatrist appointment Sept. 17. On clinical trial until this date then starts seeing psychiatrist on patient bases. Another appointment in October.
Joy went over Notice of Action which shows changes being made to IEP.
Taking off abilifymedication Sept. 17. He will have more anxiety. Will be off of for at least a 3 week trial. The team agreed that it would not be in Jake's best interests to write a reevaluation plan and pull Jake out of classes for testing right after the time his meds.
Change Sept. 17. Joy Rose told Mrs. Tucker that she would e-mail her a list of some dates that could be options of times to meet towards the beginning of October.
Curtis wants to know what reeval. is about. We do 7 areas. Test that will give us information for programming.
Specific testing in email. Is that the whole list? No. Joy told Mrs. Tucker that the district doesn't have to go out and buy specific tests if we have something comparable.
We will look at areas that need to be measured. Written language seems to be big concern for Sherri. Joy Rose told Mom to send any more specific requests to her so that she can check to see if we have that instrument or something comparable before we meet to write evaluation plan.
Parents given copy of Procedural Safeguards and Notice of Action.
Teachers were told that a copy of Amended IEP would be in their mailboxes in a day or two to replace the original IEP with.
Math teachers shared some concerns that Jake is verbally negative at times about his abilities and asked parents if they had any ideas as to how to help with this.
Going to do an observation of his route between 1 st and 2nd hr. to see ifhe is taking and knows the shortest route. Allow to leave class few mins. early Daily.
Reasons for Rejection of LRO: See *. Clarified the reasoning behind why he is in a Resource Lab. Parents okay with.
Teachers shared that they have concerns because so far Jake has been unwilling to use his laptop. No long writing assignments have been done. Jake has preferred to handwrite shorter assignments. Parents have OKed that on anything other than lengthy ones. Mr.
Smith said he had a lot of short quizzes in class and family agreed that he could stay in class and write answers unless Jake felt he needed assistance.
We discussed the fact that his unwillingness to use the Laptop is why he does not have his assignments written down. Although this is our goal, team decided to use paper assignment sheet until we can help him form this habit.
Discussed the fact that if Jake is late for class, it is not because he is talking to others in the hallway. So, we will need to cut him some slack.
Joy will make corrections to IEP and get in mail in next few days.
Will use Jacob Tucker Planner Sheet. Teachers fill out. We will look at gradually moving him from this to the planner sheet on his H drive. Folders for each class on his H drive. Check with tech. to see if teachers can put assignments in his H drive.
Get Jake used to using computer and then look at One Note and or other program. Some difficulty and confusion in using One Note.
Sits in the shower at home for 30 mins. after school to unwind.
Teacher provided notes - Jake tends to not pay attention after notes are handed to him in Math. Sherri ask if Jessi was sure he wasn't paying attention? Based on his answers to direction questions he isn't listening. Stacey suggest give him notes with some missing words here and there. Jessi will check with him to see ifhe is hungry. Isn't eating breakfast. He is bringing a snack but not sure when he's eating it. He doesn't see Geometry as math.
Curtis - If you put him on the spot in front of other people he will shut down.
Did very well listening to Peachee in ICP today.
Overall, teachers feel like he has transitioned well to this school year. He is focused and contributes in class many times more than others.
If frustrated or doesn't know what's going on will say he doesn't know what's going on.
Mtg.8-27-08
Present: Joy Rose, Sherrie Tucker, Curtis Tucker, Rick Smith, Stacey Martin, Kim Sterne, Dawn Payne, Cindy Britt, Gerald Clevenger, Jamie Argotsinger, Jessi Ramsey, Janalee Byers, Michelle Rees, Christine Peachee, Duane Fleck, Joyce Jackson, Kelli Wilson, Deanna Thorne
After introductions, Joy Rose shared the agenda and explained that the team would be considering parental requests for changes to be made to the IEP that had been shared with them before school started.
See Draft of Proposed changes for Amendment:
Page 2 IEP last paragraph * written in, yellow highlight on pg. 2 show written language.
He also has 2 written language goals.
Sherri - he definently shows a written lang. deficit. It shows in Present Level.
Sherri - I guess will just wait til you do the right testing this time and it shows up.
Assistive Tech. - Change, been resistive to carrying, to appeared resistive to carrying. Sherri questioned whether or not his appearing resistive to carrying his Quick Pad should be in there since she feels it is only because he didn't believe it worked. Joy Rose told her that we may just have to meet each other half way on this as for whatever reason, our staff observations indicate that he appeared resistant to carrying it.
Sherri believes Jacob does not have any strengths statement changed to reflect for transition., see PLAAFP at bottom.
State/District Assess. Mark out tests red if not measuring reading because of changes to state testing this year. That won't be allowed.
Mods. - Do parents want teachers to push Jacob to small group testing or give him the choice to stay with his class. Mom wants to talk to Jake. She will get back to us.
Small group testing has to do with the noise around him not being sure what he understands what's being ask. Mod's in question were changed to Daily with some change in wording on some. Joy Rose explained to parents that we do not want to frustrate Jacob by forcing him to leave the class for testing ifhe feels that he does not need to go as then he sometimes shuts down. Mr. Curtis agreed that Jacob does not like to have attention drawn to himself.
English - Quizes every Friday. Okay to ask him what he wants to do. Discussed his difficulty explaining how a person felt in a story.
If he takes test/quiz and does fine then okay. Ifhe doesn't do well investigate why. May need small group/indo Retake.
Use computer on extended writing assignments. Anything more than 5-8 sentences.
Dawn Payne ask about some of the work in English. Showed examples. Mom was okay with them.
Special spot in classroom for Jake's supplies - Math is working out well. It's working perfectly.
I
Lee's Summit High School
400 S.E. Blue Parkway Lee's Summit, Missouri 64063-4399 (816) 986-2000 FAX (816) 986-2095
September 5, 2008
Dear Sherri,
In response to your e-mail of August 29, please find attached a copy of our Conference Notes. The participants are listed. Hopefully it will be helpful to you to have to compare with your notes. If you are not comfortable with Goal Number 6 now that you have had time to consider it, please let us know what you would like to see focused upon.
Thank you also for sending us information on the reevaluation you would like to see. We will look forward to seeing you October 6th. Per your request, I will e-mail you our suggestions utilizing your input on an evaluation plan. We can then make the final decisions on areas to be evaluated and instruments to be used as a team when we meet. I might suggest having a smaller team, utilizing the members that are required to be legal, when we write the evaluation plan. I would feel it is more important to have as many of the teachers present as possible when we go through the results of testing and look at the implications for programming. Would you be comfortable with that?
Respectfully yours,
Joy Rose SPED Process Coordinator
My Notes:
I would like to make sure that we all have a clear understanding of the meeting that took place yesterday. It was scheduled on September 19, 2006. The attendees were Sherri Tucker, Diane Stark (sister of Sherri and employee of Children's Mercy Hospital since 1981), Todd Wilson, Kim Berkstresser, and Suzanne Vleisides. Jannette Cooley
attended half of the meeting. I need a copy of the schools' minutes for this meeting. Please correct me on any items that I am mistaken on.
The meeting was called to discuss the modifications that should be made to Jacob Tucker's IEP. He has modifications in every class and his mother felt that he needed modifications in PE. She has done a great deal of research on this subject and has offered the information to all that were involved in this meeting, with the exception of Ms. Cooley.
I began the meeting by reading some information that had been given to me by a specialist in AS. I wanted the team to be privy to knowledge that I had gained in the hours prior to the meeting. I also stated that I had spoken with many parents of children in middle school with AS.
I read the following: "Jacob is challenged every single day. Physically, socially and mentally. Jacob also needs a different kind of preparation for the world outside of school. Most AS kids live outside their comfort zone just by virtue of walking into the school building."
I also told everyone that Jake's psychologist has determined that Jake has anxiety issues and they are mostly due to school.
There was some more conversation and it there was a lot of back and forth about autism. I don't believe that Mr. Wilson is very knowledgeable about autism. That is the impression that I got.
I believe that Mr. Wilson then stated that he did not believe this to be the case and that he knew Jake better than any "What do you call it? AS?" specialists. I believe that he then said that he still do not believe that Jake was suffering from anxiety. I explained that Jake's anxiety was not detectable to him because he is autistic and doesn't act the same as "normal" kids.
Kim and Suzanne were very good at facilitating the meeting. They kept asking what modifications needed to be put into Jake's IEP. I stated that I did not want Jake to have to run laps. He had been punished for not running laps the prior week.
Mr. Wilson stated that Jake was not punished for walking he was punished for not running the last 20 feet when he was instructed to. I asked Mr. Wilson what he told Jake. He stated that he told Jake and two other kids that they needed to "hustle" on the last 20 feet. He said that he punished Jake for not following instructions and that he felt that Jake needed to be punished.
I explained that Jake is autistic and he takes things literally. "Hustle" does not mean run to Jake. I'm not even sure
that he knows what it means. I told him that Jake thought that he was being punished for not running all of the laps. He did not understand that he was being punished for not "hustling" and was probably not even sure what was being asked of him.
I went on to explain to Mr. Wilson that AS kids have difficulties with motor skills. He stated that he disagreed and that he knew more about Jake's abilities than I do.
Somewhere during this conversation Ms. Cooley arrived in the meeting. There were many conversations going back and forth and I can't recall every one. I will request that future meetings be recorded.
We finally got back down to discussing the modifications. There was some confusion as to what to put into the IEP. I stated that I had hoped that the team would have some suggestions and felt that the PE teacher would be the best person to come up with some of these, but it appeared that the PE teacher didn't feel that modifications were warranted and that I would need to do some more research on my own time.
We did decide that Jake should not have to run laps. It got pretty technical and there was discussion as to whether he should run during basketball, etc. It was finally decided that Jake would not have to run laps or long distances.
I believe that Mr. Wilson asked how that would be handled and if he would say to all of the kids "You all have to run, but Jake you can walk." He also stated, "What happens if Jake accidently runs? Am I going to get into trouble for that?"
Kim, Suzanne, my sister, and I all stated that it would be great if Jake ran, but that he doesn't have to. I stated that I didn't want there to be any question about whether Jake had to run or not and that's why I wanted it in black and white. I didn't want to depend on the teacher to make a decision for a child that has a disorder that he clearly doesn't understand.
Mr. Wilson brought up an email that I wrote to him last year. He had emailed me the above and I responded in a positive way. We had so many issues with Jake last year that I didn't want to add to it. I responded in a kind and positive way to Mr. Wilson in hopes that he respond in the same way to Jake.
We discussed how Jake loved PE in elementary school and felt that Mr. Bishop hung the moon. I said that I agreed with that statement. Mr. Bishop is an excellent teacher and beyond that a wonderful and caring human being.
Mr. Wilson said that he felt that Jake liked him and had never appeared to be upset. I explained that Jake is autistic. He doesn't dislike people. He doesn't see the good or bad in people. He may be stressed by an activity, but not by the person making him do it.
Mr. Wilson asked me if I would be telling Jake that he didn't have to do anything he didn't want to in PE. I told him that what I discuss with adults is not the same as I what I tell Jake. I told that I would never go home and say "That person is mean." I will simply tell Jake that he needs to do his best and if he can't run then walking would be acceptable.
It was my feeling that Mr. Wilson was not on board with Jake having modifications. He continued to assert that Jake was up to the challenge of PE. I continued to assert that Jake is not a "normal" child and that he is not.
My sister brought up the fact that Mr. Wilson stated that my son lied. Mr. Wilson corrected her and said that he purposely stated that he didn't lie. So, we agreed that he stated that he slanted the truth. My sister stated that Mr. Wilson stated that Jake might be doing this in all of classes. She asked him how many of Jake's classes he had been in.
My sister brought up the fact that Mr. Wilson had addressed Jake's need for a healthy diet at home and that he felt that Jake needed to drink less pop at home so that he could get to sleep. Mr. Wilson agreed that I had sent him an email explaining that children with AS have sleep issues and that it has nothing to do with diet or pop consumption.
Mr. Wilson at first stated that Jake told him that he drinks pop before he goes to bed. He then stated that Jake drinks 3 or 4 cans of pop before he goes to bed. I explained to Mr. Wilson that he asked Jake if he drinks pop and Jake answered yes. Once again, I explained to Mr. Wilson that Jake is autistic and will only respond to a direct question. If he had asked Jake what time he drank that pop and how much, Jake would have answered that. Jake only told him that he drank pop.
I said that perhaps I should talk to my psychologist and see about having Jake released from PE. I really didn't feel that it was a good environment for Jake and I would not allow us to go back to where we were last year.
Ms. Cooley stated that she didn't want me to discuss last year anymore. My sister said that I had attended so many meetings last year and nothing was ever fixed.
Ms. Cooley told my sister that discussing last year wasn't going to get us anywhere and that no purpose was served by bringing it up. We need to focus on the positive.
I tried to insert, "If we don't learn from our past we are doomed to make the same mistakes." but I didn't get to finish my thoughts.
We once again discussed the modifications and Kim and Suzanne said that they knew that Mr. Wilson would follow through with whatever we decided. We decided that Jake would not have to run laps or long distances.
We concluded the meeting at that point.
I came home and contacted Jake's psychologist and talked to him about this meeting. We agreed that the atmosphere, in PE, would not be good for Jake's emotional and psychological well being. I told the psychologist that Jake's father would be taking him to the gym three times a week for physical fitness.
I would like to see Mr. Wilson attend a class on autism because I feel that he doesn't understand the disorder and it's impact on the students that he serves.
Their Notes:
Jacob gets anxious from PE he has to run more laps, sit-ups, or push-ups he's going to cause them to lose-all statements from Sherri. There are ways to modify w/out taking him out of PE. the team all agreed. Jake is pushed to the limits getting here Todd said he doesn't want him punished to do something beyond your control. Jacob has never been forced or will be to asked to run an extra lap as punishment following instructions is a concern Long distances Jake will walk rather than run. Jake will be encouraged to do his best but will not be punished for walking.
Wednesday, October 1, 2008
My minutes from the June DESE Special Education Advisory Panel Meeting
I have a few handouts that I will be willing to share with everyone. I won't go into detail about the programs that are discussed because they can be found on the internet. I would rather discuss the child complaint process and how it is being handled.
I am on the monitoring committee for the SEAP. Our responsibilities are to advise the SEA in developing corrective action plans to address findings identified in Federal monitoring reports under Part B of the ACT
Defined Purpose
(1) review statewide monitoring trends
(2) review corrective action plans (CAP) and improvement plans (IP) submitted to OSEP
(3) review MSIP cycle plans
(4) review due process and child complaint results
Part of our responsibilities are to deal with formal recommendations. Formal Recommendation #9 (Guidelines/Parameters for a Child Complaint Review, June 2004) was one that we discussed.
There is currently a database in place to track the survey information. The division is receiving very few child complaint surveys returned and DESE staff have been discussing options for getting more surveys returned. At the December 7, 2007, meeting Heidi Atkins Lieberman presented data which included the types of child complaint issues, comparison data by year, and summary information by allegation/complaint with the panel. At the March 13, 2008, meeting, the recommendation was made to refer back to the monitoring committee for review with a final decision to be made at the June 2008 meeting.
DESE asked the panel what they would like to have done. Panel indicated it appears that the survey process does not inhibit anyone from replying and if people choose not to respond, DESE has done the best it can to gather the information. DESE will continue to send the surveys for one more year and bring the results to the panel periodically.
The executive committee and the monitoring committee had a conference call in May and we agreed that we wanted to continue the program. We discussed the reasons why parents are probably not filling out the surveys and suggested that it be more family friendly and less frightening for a family.
When the matter was brought up at our meeting, Heidi stated that she would not continue the program and feels parents have every opportunity to provide feedback in the same manner that they filed the complaint. She stated that parents are never happy with the results and that the surveys are a waste of time. She stated that parents want the child complaint system to be punitive and it is not. She said child complaints are just for getting the schools into compliance. They are not to be used to punish the districts.
She went on to say that parents didn't get calls from DESE in the past when they were investigating the child complaints. They realized that might be frustrating for families and they started doing that. Parents should be happy that DESE took that step.
Heidi stated that there were plenty of avenues for parents that are not happy. She said that there is MOCASE and MPACT. She said that they are in place to help parents and that they should do their complaining through them. I told her that many parents are afraid of retaliation and that's why they don't return the surveys . I said that they might get a better response if they made it less intimidating. Doreen stated that most parents aren't aware of the resources that are available to them and that they need a safe place to voice their concerns. Bev stated that some parents are afraid to complain because their children might lose the little bit of services that they are receiving.
Heidi stated that it was MPACT's job to train parents and to help them deal with these issues. She stated that is why she has Mary Kay attends almost every meeting, function, etc. She said that I should complain to Mary Kay about MPACT not doing their job if parents feel this way. She also stated that Mary Kay would be speaking at the next meeting. Please understand that she was not attacking Mary Kay or MPACT. She was attacking parents for being uninformed.
Heidi stated that the only thing that she had asked of the monitoring committee was for them to end the surveys. She had no intentions of us continuing them. She also looked at me and said that she was sure that I knew that once she made up her mind she would not be forced to change it. I believe that has to do with her picking Lee's Summit R7 to present at the Superintendent's Conference.
We took a vote to see if the surveys should be discontinued. Three of us voted no. Heidi abstained. The rest voted yes. So, there will no longer be any surveys for parents to fill out.
Kris stated that too many parents are mad at DESE and then they join the SEAP to advocate for their children. She said that parents held up the meetings with complaints about DESE. That is what used to happen on the panel. Now meetings go smoothly because no one is there to be adversarial or to advocate for the children.
I believe that comment was for me. I believe that I was being put in my place. Come here, praise DESE, and go home.
On another note, I was elected to the Executive Committee. Don't ask me how.
I am on the monitoring committee for the SEAP. Our responsibilities are to advise the SEA in developing corrective action plans to address findings identified in Federal monitoring reports under Part B of the ACT
Defined Purpose
(1) review statewide monitoring trends
(2) review corrective action plans (CAP) and improvement plans (IP) submitted to OSEP
(3) review MSIP cycle plans
(4) review due process and child complaint results
Part of our responsibilities are to deal with formal recommendations. Formal Recommendation #9 (Guidelines/Parameters for a Child Complaint Review, June 2004) was one that we discussed.
There is currently a database in place to track the survey information. The division is receiving very few child complaint surveys returned and DESE staff have been discussing options for getting more surveys returned. At the December 7, 2007, meeting Heidi Atkins Lieberman presented data which included the types of child complaint issues, comparison data by year, and summary information by allegation/complaint with the panel. At the March 13, 2008, meeting, the recommendation was made to refer back to the monitoring committee for review with a final decision to be made at the June 2008 meeting.
DESE asked the panel what they would like to have done. Panel indicated it appears that the survey process does not inhibit anyone from replying and if people choose not to respond, DESE has done the best it can to gather the information. DESE will continue to send the surveys for one more year and bring the results to the panel periodically.
The executive committee and the monitoring committee had a conference call in May and we agreed that we wanted to continue the program. We discussed the reasons why parents are probably not filling out the surveys and suggested that it be more family friendly and less frightening for a family.
When the matter was brought up at our meeting, Heidi stated that she would not continue the program and feels parents have every opportunity to provide feedback in the same manner that they filed the complaint. She stated that parents are never happy with the results and that the surveys are a waste of time. She stated that parents want the child complaint system to be punitive and it is not. She said child complaints are just for getting the schools into compliance. They are not to be used to punish the districts.
She went on to say that parents didn't get calls from DESE in the past when they were investigating the child complaints. They realized that might be frustrating for families and they started doing that. Parents should be happy that DESE took that step.
Heidi stated that there were plenty of avenues for parents that are not happy. She said that there is MOCASE and MPACT. She said that they are in place to help parents and that they should do their complaining through them. I told her that many parents are afraid of retaliation and that's why they don't return the surveys . I said that they might get a better response if they made it less intimidating. Doreen stated that most parents aren't aware of the resources that are available to them and that they need a safe place to voice their concerns. Bev stated that some parents are afraid to complain because their children might lose the little bit of services that they are receiving.
Heidi stated that it was MPACT's job to train parents and to help them deal with these issues. She stated that is why she has Mary Kay attends almost every meeting, function, etc. She said that I should complain to Mary Kay about MPACT not doing their job if parents feel this way. She also stated that Mary Kay would be speaking at the next meeting. Please understand that she was not attacking Mary Kay or MPACT. She was attacking parents for being uninformed.
Heidi stated that the only thing that she had asked of the monitoring committee was for them to end the surveys. She had no intentions of us continuing them. She also looked at me and said that she was sure that I knew that once she made up her mind she would not be forced to change it. I believe that has to do with her picking Lee's Summit R7 to present at the Superintendent's Conference.
We took a vote to see if the surveys should be discontinued. Three of us voted no. Heidi abstained. The rest voted yes. So, there will no longer be any surveys for parents to fill out.
Kris stated that too many parents are mad at DESE and then they join the SEAP to advocate for their children. She said that parents held up the meetings with complaints about DESE. That is what used to happen on the panel. Now meetings go smoothly because no one is there to be adversarial or to advocate for the children.
I believe that comment was for me. I believe that I was being put in my place. Come here, praise DESE, and go home.
On another note, I was elected to the Executive Committee. Don't ask me how.
My Minutes From The March Special Education Advisory Panel Meeting
There was a speaker from KU that is working with DESE on some project for transition.
To be honest, I lost track of what she was talking about because she made it known from the beginning that parents should have little to no impact on decisions regarding programming.
At some point one of the folks on the panel asked why all of these state agencies never have parents as members on these panels.
Heidi Atkins Lieberman spoke up and said that parents aren't normally on these panels because they only want people that have decision making rights on these panels. They don't want people that can't put the ideas into action. (Translation: you have no power).
The woman then stated that parents need to have their concerns voiced. Heidi said that Mary Kay is a parent and she is on many of these committees. The woman said that she is on these committees as part of an agency and not as a parent.
Heidi said that she felt that Mary Kay would be offended by that statement because she is a passionate parent. The woman apologized and stated that she meant no harm and certainly had the utmost respect for Mary Kay, but she felt that the panel should have parents that are not a part of any other agencies.
At that point the woman from KU said that most parents couldn't possibly make the commitment to attend these meetings and that they were highly technical and then she looked at me and said, "I'm sure that you find these meetings boring, Sherri, and that you don't like attending them."
Now I have never spoken at these meetings and tried to just sit back and take it all in. I just really wanted to see how the machine worked. But, I was a little off of my game and probably a little miffed because the city was taking down my campaign signs.
I said, "I don't find these meetings boring and I attend because I want to. Parents need to be a part of every agency. I will tell you what I tell folks when I speak before them. You can read all that you want to about autism. You can study all that you want to about autism. You can get a master's degree in autism. But, until you come into my home and live my life, you don't know anything about autism."
She then interrupted me and tried to get back on track. But, she started the ball rolling and it wasn't going to be stopped that easily. I went on, "I will explain it to you in the only way that I know how. It's like going to a male gynecologist. He can read about cramps. He can understand scientifically about what causes cramps. He will never know what cramps are because he has never had them."
Later in the meeting (and I was giving it my best effort to remain my usual silent self) we were going over our committee reports. One lady said that she would like to see DESE limit the number of advocates (she couldn't pronounce the word) that come to IEP meetings. She also stated that there should be some wording about how they would be forced to behave.
Ok, folks, it's been a long week and frankly I don't have much faith in the system. I said that parents never go to their first IEP meeting with an advocate. They do that after they have tried to work in the system. I told her that I speak as a person that goes to IEP meetings with families and sometimes we take 8 people with us. It evens out the odds and levels the playing field.
I told her that you can not legislate good behavior. I told her parents would not become adversarial if they weren't backed into a corner.
Heidi then mentioned that they are trying to get MPACT into schools to do parent training. I told her that MPACT is already doing parent training and all one has to do is go online and look at their schedule and class list.
Heidi said that parents didn't know how to find the information and that's why it is going to be so great that the districts will host the trainings. Wouldn't it be great if the districts just told the families about the training without they and DESE having to get credit for hosting the training? How about the districts and DESE just do what they are federally mandated and the whole discussion would be mute?
Another member of the panel spoke up and said that she was a special ed teacher and that she understood the district side of it and that it could become adversarial. She is also a parent of a child with a disability and has to hire an advocate to go with her to meetings. UMM!!
By the way, the panel is supposed to be made up of mostly parents, but they find ways around that by getting parents that work for school districts that have children with disabilities. There were two people there yesterday that had no other agenda other than our children. Not very good odds.
To be honest, I lost track of what she was talking about because she made it known from the beginning that parents should have little to no impact on decisions regarding programming.
At some point one of the folks on the panel asked why all of these state agencies never have parents as members on these panels.
Heidi Atkins Lieberman spoke up and said that parents aren't normally on these panels because they only want people that have decision making rights on these panels. They don't want people that can't put the ideas into action. (Translation: you have no power).
The woman then stated that parents need to have their concerns voiced. Heidi said that Mary Kay is a parent and she is on many of these committees. The woman said that she is on these committees as part of an agency and not as a parent.
Heidi said that she felt that Mary Kay would be offended by that statement because she is a passionate parent. The woman apologized and stated that she meant no harm and certainly had the utmost respect for Mary Kay, but she felt that the panel should have parents that are not a part of any other agencies.
At that point the woman from KU said that most parents couldn't possibly make the commitment to attend these meetings and that they were highly technical and then she looked at me and said, "I'm sure that you find these meetings boring, Sherri, and that you don't like attending them."
Now I have never spoken at these meetings and tried to just sit back and take it all in. I just really wanted to see how the machine worked. But, I was a little off of my game and probably a little miffed because the city was taking down my campaign signs.
I said, "I don't find these meetings boring and I attend because I want to. Parents need to be a part of every agency. I will tell you what I tell folks when I speak before them. You can read all that you want to about autism. You can study all that you want to about autism. You can get a master's degree in autism. But, until you come into my home and live my life, you don't know anything about autism."
She then interrupted me and tried to get back on track. But, she started the ball rolling and it wasn't going to be stopped that easily. I went on, "I will explain it to you in the only way that I know how. It's like going to a male gynecologist. He can read about cramps. He can understand scientifically about what causes cramps. He will never know what cramps are because he has never had them."
Later in the meeting (and I was giving it my best effort to remain my usual silent self) we were going over our committee reports. One lady said that she would like to see DESE limit the number of advocates (she couldn't pronounce the word) that come to IEP meetings. She also stated that there should be some wording about how they would be forced to behave.
Ok, folks, it's been a long week and frankly I don't have much faith in the system. I said that parents never go to their first IEP meeting with an advocate. They do that after they have tried to work in the system. I told her that I speak as a person that goes to IEP meetings with families and sometimes we take 8 people with us. It evens out the odds and levels the playing field.
I told her that you can not legislate good behavior. I told her parents would not become adversarial if they weren't backed into a corner.
Heidi then mentioned that they are trying to get MPACT into schools to do parent training. I told her that MPACT is already doing parent training and all one has to do is go online and look at their schedule and class list.
Heidi said that parents didn't know how to find the information and that's why it is going to be so great that the districts will host the trainings. Wouldn't it be great if the districts just told the families about the training without they and DESE having to get credit for hosting the training? How about the districts and DESE just do what they are federally mandated and the whole discussion would be mute?
Another member of the panel spoke up and said that she was a special ed teacher and that she understood the district side of it and that it could become adversarial. She is also a parent of a child with a disability and has to hire an advocate to go with her to meetings. UMM!!
By the way, the panel is supposed to be made up of mostly parents, but they find ways around that by getting parents that work for school districts that have children with disabilities. There were two people there yesterday that had no other agenda other than our children. Not very good odds.
Tuesday, September 30, 2008
The High Price Of Obtaining A Free And Appropriate Education
In the beginning I knew nothing. I was a mom, what did I know about special education needs, disability quotients or IDEA law ?
I stumbled across something called "parent advocates" during a visit to a local support group meeting. The school district certainly did
not give me this information. The Parent/Education Advocate is one of those "in the trenches" occupations. I and many parents like
myself need help from advocates to know what to ask for in IEP meetings
I faced that first IEP for my son without an advocate or any other support. I trusted the school for everything - information about my
son, what he needed and how the school could help. I wanted specifics. But, there were no baseline measurements as to where he
was functioning. Instead, this document that was to determine my son's educational future said things like "Terry is unorganized," "Terry is unmotivated," and "Terry lacks social skills."
It would have been useful to know how often Terry was unorganized. Was it 20 % of the school day? 50%? The entire day? Exactly how
often did he lose his math homework? Were there ever times when he was organized and motivated? Did there appear to be any pattern to
this behavior?
Those first IEP meetings were horrible. Rather than addressing classroom issues, the teachers and other education professionals
blamed me for having no discipline in the home, and spending insufficient quality homework help-time with my son. They ignored me
when I described that I had learning disabilities myself. All of this was very frustrating.
The school seemed to be focused on avoiding any responsibility for my child's education. For example, although my son had a math-
related learning disability, they never would add a math goal to the IEP. Instead, they insisted my son go to summer school each year
when he repeatedly failed math. Rather than teaching my son, they simply passed him along so someone else would have to take care of
him.
What goals were included were terribly vague. "Terry will become organized." How? The IEP never said who would help him do this or
how he was to become organized…and by when…and he was given only 30 minutes per week to accomplish this.
This was before the 1997 IDEA changes, when Congress rewrote part of IDEA and emphasized that the Parent is the number one member of the
IEP team-"parent" is actually listed first in the citation!
But even after the new rules were in effect, I still needed an advocate. The school still stalled and avoided responsibility. My
concerns and questions at IEP meetings were always met with "We need to keep moving." The same mass production mentality that was failing
my son in the classroom was failing in these meetings as well. "Our teachers have pulled themselves away from their students to be here
with you now for this meeting, which is getting way too long."
I didn't know what was supposed to happen, but I knew that this couldn't be right. I hired an advocate and an attorney for my son.
Advocates understand IEP lingo and objective measurement time frames. The advocates attempted to obtain a workable IEP for my son
that had measures and accountability included.
After a few years of this I began to learn about IDEA and what should be included in a good IEP. Three publications that were very
helpful for me were: "Better IEP's," by Barbara Bateman, "Negotiating the Special Education Maze" by Winifred
Anderson and Wrightslaw.com, wirtten by Peter and Pamela Wright.
Now I understood what to ask for in order to help my son, but advocacy requires more than just a basic understanding of the law.
My emotional angst concerning my child would always cloud my perspective. The parent advocate, with a less emotional, more
objective perspective, continued to be helpful.
Many times it seemed the school did not know the IEP laws-they just suggested a few vague things and expected me to accept them which I
did in the beginning. These were kind teachers and counselors who liked my child very much. It seems that both parents and schools
need to have help to create an IEP based on the needs of the child.
Good school/parent cooperation is the best thing that can happen for a child with special needs. Unfortunately, this is often a dream and
not reality. Instead, parents and teachers are pitted against one another by policies designed for the benefit of the district and not
the student.
In the end everything became so negative and adversarial. The school refused to be more specific and offer tutors or small classes. When
my child's IOWA scores declined and my child was doing worse with Special Education-the school told me that I could always go to due
process if I wasn't happy!!
I heard this everywhere I went…
You even hear State Board of Education Commissioners say this, and US Congressmen and OCR government attorneys…I know, I've been there
and "done that".
I was forced to get an attorney. Do you know how hard it is to find an attorney who wants to practice Special Education Law? At the time
there were only 2 in my state. The school district by law must tell parents where they can get legal help if necessary-but what a joke
that was…
My choices were:
Thursday Night Bar Group--a group of rotating lawyers who could give you bits of advice, The state's "Legal Center" -but when I called I found they were not
representing my child's group of disabilities that year. So I was forced to meet with one of the two attorneys-thank God I lived in the same city…
After a year the bill came to $15,000 and this was a very conscientious attorney who actually had a fairly low hourly fee.
School districts have teams of attorneys on retainers. Think about this, if it cost me $15,000, what did it cost the school district?
Taxpayers ARE the schools. We pay for the attorneys who fight against our children!!
In the end there often is only a parent who gets beat down and must give up-many of us turn to homeschooling or private schools. One of
us last saw her wedding ring at the local pawn shop when she borrowed money to pay for a due process meeting with the attorney.
I stumbled across something called "parent advocates" during a visit to a local support group meeting. The school district certainly did
not give me this information. The Parent/Education Advocate is one of those "in the trenches" occupations. I and many parents like
myself need help from advocates to know what to ask for in IEP meetings
I faced that first IEP for my son without an advocate or any other support. I trusted the school for everything - information about my
son, what he needed and how the school could help. I wanted specifics. But, there were no baseline measurements as to where he
was functioning. Instead, this document that was to determine my son's educational future said things like "Terry is unorganized," "Terry is unmotivated," and "Terry lacks social skills."
It would have been useful to know how often Terry was unorganized. Was it 20 % of the school day? 50%? The entire day? Exactly how
often did he lose his math homework? Were there ever times when he was organized and motivated? Did there appear to be any pattern to
this behavior?
Those first IEP meetings were horrible. Rather than addressing classroom issues, the teachers and other education professionals
blamed me for having no discipline in the home, and spending insufficient quality homework help-time with my son. They ignored me
when I described that I had learning disabilities myself. All of this was very frustrating.
The school seemed to be focused on avoiding any responsibility for my child's education. For example, although my son had a math-
related learning disability, they never would add a math goal to the IEP. Instead, they insisted my son go to summer school each year
when he repeatedly failed math. Rather than teaching my son, they simply passed him along so someone else would have to take care of
him.
What goals were included were terribly vague. "Terry will become organized." How? The IEP never said who would help him do this or
how he was to become organized…and by when…and he was given only 30 minutes per week to accomplish this.
This was before the 1997 IDEA changes, when Congress rewrote part of IDEA and emphasized that the Parent is the number one member of the
IEP team-"parent" is actually listed first in the citation!
But even after the new rules were in effect, I still needed an advocate. The school still stalled and avoided responsibility. My
concerns and questions at IEP meetings were always met with "We need to keep moving." The same mass production mentality that was failing
my son in the classroom was failing in these meetings as well. "Our teachers have pulled themselves away from their students to be here
with you now for this meeting, which is getting way too long."
I didn't know what was supposed to happen, but I knew that this couldn't be right. I hired an advocate and an attorney for my son.
Advocates understand IEP lingo and objective measurement time frames. The advocates attempted to obtain a workable IEP for my son
that had measures and accountability included.
After a few years of this I began to learn about IDEA and what should be included in a good IEP. Three publications that were very
helpful for me were: "Better IEP's," by Barbara Bateman, "Negotiating the Special Education Maze" by Winifred
Anderson and Wrightslaw.com, wirtten by Peter and Pamela Wright.
Now I understood what to ask for in order to help my son, but advocacy requires more than just a basic understanding of the law.
My emotional angst concerning my child would always cloud my perspective. The parent advocate, with a less emotional, more
objective perspective, continued to be helpful.
Many times it seemed the school did not know the IEP laws-they just suggested a few vague things and expected me to accept them which I
did in the beginning. These were kind teachers and counselors who liked my child very much. It seems that both parents and schools
need to have help to create an IEP based on the needs of the child.
Good school/parent cooperation is the best thing that can happen for a child with special needs. Unfortunately, this is often a dream and
not reality. Instead, parents and teachers are pitted against one another by policies designed for the benefit of the district and not
the student.
In the end everything became so negative and adversarial. The school refused to be more specific and offer tutors or small classes. When
my child's IOWA scores declined and my child was doing worse with Special Education-the school told me that I could always go to due
process if I wasn't happy!!
I heard this everywhere I went…
You even hear State Board of Education Commissioners say this, and US Congressmen and OCR government attorneys…I know, I've been there
and "done that".
I was forced to get an attorney. Do you know how hard it is to find an attorney who wants to practice Special Education Law? At the time
there were only 2 in my state. The school district by law must tell parents where they can get legal help if necessary-but what a joke
that was…
My choices were:
Thursday Night Bar Group--a group of rotating lawyers who could give you bits of advice, The state's "Legal Center" -but when I called I found they were not
representing my child's group of disabilities that year. So I was forced to meet with one of the two attorneys-thank God I lived in the same city…
After a year the bill came to $15,000 and this was a very conscientious attorney who actually had a fairly low hourly fee.
School districts have teams of attorneys on retainers. Think about this, if it cost me $15,000, what did it cost the school district?
Taxpayers ARE the schools. We pay for the attorneys who fight against our children!!
In the end there often is only a parent who gets beat down and must give up-many of us turn to homeschooling or private schools. One of
us last saw her wedding ring at the local pawn shop when she borrowed money to pay for a due process meeting with the attorney.
Social Learning: Is This The Responsibility of School Districts?
This is what is missing from my son's IEP. The district has never addressed his social skills. They finally gave him a Vineland Adaptive Behavior Scales at the end of 7th grade. His score in the interpersonal skills was that of a four year old. Even after they saw this, they didn't mention doing anything for him and acted as though it was no big deal.
Social Learning: Is This The Responsibility of School Districts?
Rebecca K. Spar
Cole Schotz Docket
Summer 2007
As more and more children are diagnosed with disabling conditions like autism, which often include significant deficiencies in social skills, parents are increasingly insisting that their school districts address their child’s social skill deficiencies. Failing to respond appropriately proved expensive for one California school district. In 2005 the Manhattan Beach Unified School District and the California Department of Education agreed to pay more than $6.7 million to a family, based in part on the district’s failure to provide appropriate social skills instruction and modeling to a fourth grader with autism.
Federal courts in this jurisdiction have consistently recognized that the concept of education is broad and formal education may begin by working on basic social skills. These decisions for the most part, though, involved children with significant cognitive issues who were not attending general classes or expected to master the core content academic curriculum.
School districts have been more reluctant to get involved when the student is bright, receives passing or even honors grades, but has significant social skills deficiencies. As districts see the consequences of the isolation, rejection and even harassment of these students by their peers, there is increasing awareness of how students’ social skill deficiencies impact upon students’ overall emotional and social well-being and educational performance and on the well-being of the school system as a whole. There is also an increasing recognition that all students need flexible thinking, problem solving, teamwork and other social skills abilities if they are to succeed in employment and in their personal future lives.
The First Circuit Court of Appeals recently spoke to this issue in a case involving a bright, well-behaved honors student diagnosed with Aspergers Syndrome, a condition on the autism spectrum but where the student typically has strong cognitive skills but very significant social impairments. In this case, the student was withdrawn, could not connect with her peers or her teachers, was inflexible, unable to handle change and misread social cues. Even after the student became so upset that she tried to commit suicide, the school district refused to provide her with any special education services, saying her educational performance was not adversely affected by her social impairment as she received good grades. The District Court and Court of Appeals both disagreed, holding that educational performance can include social skill deficiencies which adversely impact upon the student’s continuing participation in general classes. The courts also held that social-skills and pragmatic instruction could be the special education needed by the student to access the general curriculum.
Social skills services can include direct teaching of social skills individually or in groups, modeling and facilitating social skill development through assigning peer “buddy” or nondisabled peers to attend class or extracurricular activities with the student. It may also include social skills coaching and training of the teaching staff and aides in how to facilitate social skill development. It is up to the child’s Individualized Education Program (IEP) team, including the parents, to decide whether social skills are an area of need and how they should be addressed and to include the appropriate services in the child’s IEP.
Social Learning: Is This The Responsibility of School Districts?
Rebecca K. Spar
Cole Schotz Docket
Summer 2007
As more and more children are diagnosed with disabling conditions like autism, which often include significant deficiencies in social skills, parents are increasingly insisting that their school districts address their child’s social skill deficiencies. Failing to respond appropriately proved expensive for one California school district. In 2005 the Manhattan Beach Unified School District and the California Department of Education agreed to pay more than $6.7 million to a family, based in part on the district’s failure to provide appropriate social skills instruction and modeling to a fourth grader with autism.
Federal courts in this jurisdiction have consistently recognized that the concept of education is broad and formal education may begin by working on basic social skills. These decisions for the most part, though, involved children with significant cognitive issues who were not attending general classes or expected to master the core content academic curriculum.
School districts have been more reluctant to get involved when the student is bright, receives passing or even honors grades, but has significant social skills deficiencies. As districts see the consequences of the isolation, rejection and even harassment of these students by their peers, there is increasing awareness of how students’ social skill deficiencies impact upon students’ overall emotional and social well-being and educational performance and on the well-being of the school system as a whole. There is also an increasing recognition that all students need flexible thinking, problem solving, teamwork and other social skills abilities if they are to succeed in employment and in their personal future lives.
The First Circuit Court of Appeals recently spoke to this issue in a case involving a bright, well-behaved honors student diagnosed with Aspergers Syndrome, a condition on the autism spectrum but where the student typically has strong cognitive skills but very significant social impairments. In this case, the student was withdrawn, could not connect with her peers or her teachers, was inflexible, unable to handle change and misread social cues. Even after the student became so upset that she tried to commit suicide, the school district refused to provide her with any special education services, saying her educational performance was not adversely affected by her social impairment as she received good grades. The District Court and Court of Appeals both disagreed, holding that educational performance can include social skill deficiencies which adversely impact upon the student’s continuing participation in general classes. The courts also held that social-skills and pragmatic instruction could be the special education needed by the student to access the general curriculum.
Social skills services can include direct teaching of social skills individually or in groups, modeling and facilitating social skill development through assigning peer “buddy” or nondisabled peers to attend class or extracurricular activities with the student. It may also include social skills coaching and training of the teaching staff and aides in how to facilitate social skill development. It is up to the child’s Individualized Education Program (IEP) team, including the parents, to decide whether social skills are an area of need and how they should be addressed and to include the appropriate services in the child’s IEP.
Thursday, September 25, 2008
Autism vs Vaccinations
Comments
lsautism2 - 9:12 AM
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PLively, So because you work with children with autism, you know more than a parent who lives with autism 24/7? That is what your post implied. The two are no where equal. People extremely close to parents of children with autism don't even understand fully what we go through. No one can understand unless they have been there.
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lsautism - 8:38 AM
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Actually I wasn't referring to your post, but the post before yours. I am sorry that you took such offense to mine. http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims. The unprecedented concession was filed on November 9, and sealed to protect the plaintiff's identify. It was obtained through individuals unrelated to the case. The claim, one of 4,900 autism cases currently pending in Federal "Vaccine Court," was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the "defendant" in all Vaccine Court cases.
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jaylomom - 12:03 AM
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My son also who will be nine in Feb. has Autism and I have believed from the get go it was because of the shots. I remember after that shot my son would sit there and shake and that is when he started showing signs. By age two he quite talking, but I am very lucky to say he is doing much better now. He still has Autism and will the rest of his life. If I had to do all over again I would not allowed my sons to be given the "shot".
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PLively - 12:02 AM
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I would surely vaccinate subsequent children. Why would I put my children at risk for illness or even death when there are vaccines to prevent these illnesses? Sorry but the Federal Court didn't rule that vaccines cause Autism. The court simply found that there might be a possible relationship. That's a huge stretch from that to a causal relationship. Reread my comments. There is no judgement passed. I'm simply stating that not vaccinating a child puts other children at risk. Please, make no assumptions about how blessed I am or that I haven't had to make the decision they made. I take care of children with Autism. You have no clue when you pass judgement on me about my choices, my decisions and my experiences. And, you are clueless about what I'll live with the rest of my life. Pot/kettle/black The only disservice we can do for families of Autistic children is support the idea that vaccines cause Autism. It's a hell of a lot more compassionate to work together to find a cure. Focusing on vaccines as the culprit is a distraction from the task of helping Autistic children and their families.
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lsautism - 9/24/2008
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If your first child was a beautiful, typical child until the vaccines and then disappeared within himself, would you vaccinate the children that came after him? The United States Federal Court just ruled in favor of a family and their ruling was that vaccines caused their daughter's autism. Do I know if autism is caused by vaccines? No, I don't. Would I expect the Davis family to vaccinate their second child? Not in a million years. It is easy to sit back and pass judgement when you don't have to walk in another families shoes. How blessed you are to not have to make the decision that they had to make. But, please don't make judgements on something that you have never experienced and won't have to live with for the rest of your life.
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PLively - 9/24/2008
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The possibility of vaccines as a cause of Autism has been studied over and over. The one thing which DOESN'T cause Autism is vaccinating a child. But, not vaccinating a child puts that child and those around her at risk. If parents want to put their own children at risk for vaccine preventable illnesses that's one thing. To put other children at risk is unacceptable. For example, Haemophilus Influenza type B causes invasive infection which results in blood infections and/or, meningitis. It killed many children, and gave others brain damage or hearing loss. Funny though, I haven't seen a case of invasive Haemophilus B since routine immunization with the HIB vaccine was initiated in the early 1990s. The prevention of disease by vaccines is actual, not theoretical. The causal relationship between vaccines and autism is theoretical and, fortunately, has been disproven. Regards, Paul H. Lively, D.O, F.A.A.P
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iolan - 9/24/2008
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If parents reject vaccinations, their child or children should not be allowed in public schools or any other place where large crowds are. Also if their child comes down with the disease and there are complications resulting in long hospitalization, they should have to bear the cost themselves. And if it is serious enough to endanger the life of the child, they should face criminal charges. Phillip L. Crown 821 E. Broadway IOLA, KS 66749
LEE'S SUMMIT, Mo - As a baby, Tristan Davis showed all the signs of being a normal, healthy child. His parents say he met all the major milestones of a developing baby, including walking and talking.
However, for the past six years, Aimee and Joel Davis say their oldest son has not uttered a single word.
"We always describe it as a dimmer switch," Aimee said. "It was just like slowly, slowly he was fading away. And then by the age of 2, he was gone."
Tristan, who turns 8 next month, has a severe case of autism. The brain disorder affects his ability to communicate and causes wild mood swings. While playing in the backyard, Tristan has a tendency to dart off and climb fences, forcing Joel to chase him down in neighbors' yards. Inside the house, he is under constant surveillance.
What Happened?
"I definitely believe in my heart the vaccinations triggered his autism."
So what caused such a rapid, dramatic change in their son? It is a question that vexes thousands of parents who have children with autism, a disorder now diagnosed at a rate of one out every 150 children.
Looking back, Tristan's parents say the turning point was a round of vaccines he received as a toddler. Aimee said her son immediately became sick and battled through a month of various illnesses. Joel's brother and sister had also suffered adverse reactions to vaccinations, so the family assumed it could be something in the genes.
But when the parents later received the autism diagnosis from a doctor, they suspected something else.
"The timing was too coincidental to ignore and I definitely believe in my heart the vaccinations triggered his autism," Aimee said.
Not Alone
Related Links
Thousands of Unvaccinated Children Enter Schools
The Davis couple is far from alone. It is a belief shared by a growing number of parents around the country. Doctors say they are getting more questions about vaccine safety. The fear of a possible link to autism and other health problems is causing parents not to immunize their children.
For instance, the Davis' younger son, Cole, started kindergarten this year without getting his vaccine shots. The 5-year-old is still allowed in the classroom with other students because the family filed for an exemption with the Lee's Summit School District. The paperwork states the vaccines go against their religious beliefs.
"Why play that 'what if' game?" Joel said. "We're going to take it on a day-to-day basis and do what's best for our child."
Mandated Vaccinations
Courtesy: National Vaccine Information Center
Related Links
NVIC State Exemptions
Tell Us What You Think
Updated vaccination records for students are mandated by law before they enter into school districts. However, in 48 of 50 states -- including Missouri and Kansas -- parents can get a legal exemption for medical or religious reasons. Eighteen of those states have added a third exemption, which allows parents to opt their children out for philosophical or personal beliefs.
Click on the map to see a larger version showing which exemptions are allowed in what states.
In many of the states with the philosophical option, experts say the exemption rates have jumped to 2 or 3 percent of the student population. Typically, the rate is 1 percent or less. Kansas and Missouri have seen a slight increase in exemption requests during the past few years, but are still hovering around the 1 percent threshold. The exact figures can be difficult to track because they rely on survey from school districts and do not include home-school children.
In Missouri, there has been a push over the past five years to add a philosophical exemption for parents, but the idea has yet to win legislative approval.
Questions and Concerns
Should Kansas and Missouri let parents exempt their children from vaccinations for philosophical reasons?
Yes (72.7%)
No (24.2%)
Not Sure (3.0%)
Pediatricians like Dr. Scott Dattel are getting more questions than ever from parents concerned about vaccine safety. Dattel said many of the fears are fueled by rumors circulating on the Internet. However, Dattel insists there is no proof of a connection to autism, a claim that is backed by piles of medical research.
A study released in early September showed no link between the measles vaccine and autism. Those findings debunked a 1998 British study, which originally linked the so-called MMR vaccine with a subgroup of autistic children.
"Vaccines are given to kids. Autism happens to kids. I don't think there is a true link. It just does happen," Dattel said.
Taking a Risk
Dr. Scott Dattel
"These vaccines actually protect against diseases that can kill."
So what is the harm of children skipping their shots? Health experts point to this year's measles outbreak -- the nation's largest in more than a decade -- as an example. A Center for Disease Control report found the majority of the 135 people infected did not receive the measles vaccine for personal reasons.
Doctors say it has been so long since some diseases were prevalent, parents are underestimating the potential dangers.
"These vaccines actually protect against diseases that can kill," Dattel said.
Thad Wilson heads the Mid America Immunization Coalition, a group comprised of medical and educational leaders who are trying to boost vaccination rates. He said it is good for parents to ask questions and educate themselves about vaccines. But he worries personal convictions could begin to interfere with public health. Wilson said the development of vaccines ranks in the top four public health advances of the 20th century.
"I've seen a child die of measles. I've seen someone who had polio and I know the devastation caused by it," Wilson said. "If everyone is allowed to do what they want, we'll end up back where we were in the 1920s with large outbreaks."
Looking Forward
Aimee and Joel Davis are not ruling out vaccines for Cole in the future. For now, it is a risk the Lee's Summit couple is willing to take.
"Who knows? But it sure would be nice to have some answers instead of that big question mark we've had hanging over us for the past six years," Joel said.
In Missouri, there's been a recent push to add a philosophical exemption, but it has yet to win legislative approval.
lsautism2 - 9:12 AM
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PLively, So because you work with children with autism, you know more than a parent who lives with autism 24/7? That is what your post implied. The two are no where equal. People extremely close to parents of children with autism don't even understand fully what we go through. No one can understand unless they have been there.
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lsautism - 8:38 AM
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Actually I wasn't referring to your post, but the post before yours. I am sorry that you took such offense to mine. http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims. The unprecedented concession was filed on November 9, and sealed to protect the plaintiff's identify. It was obtained through individuals unrelated to the case. The claim, one of 4,900 autism cases currently pending in Federal "Vaccine Court," was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the "defendant" in all Vaccine Court cases.
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jaylomom - 12:03 AM
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My son also who will be nine in Feb. has Autism and I have believed from the get go it was because of the shots. I remember after that shot my son would sit there and shake and that is when he started showing signs. By age two he quite talking, but I am very lucky to say he is doing much better now. He still has Autism and will the rest of his life. If I had to do all over again I would not allowed my sons to be given the "shot".
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PLively - 12:02 AM
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I would surely vaccinate subsequent children. Why would I put my children at risk for illness or even death when there are vaccines to prevent these illnesses? Sorry but the Federal Court didn't rule that vaccines cause Autism. The court simply found that there might be a possible relationship. That's a huge stretch from that to a causal relationship. Reread my comments. There is no judgement passed. I'm simply stating that not vaccinating a child puts other children at risk. Please, make no assumptions about how blessed I am or that I haven't had to make the decision they made. I take care of children with Autism. You have no clue when you pass judgement on me about my choices, my decisions and my experiences. And, you are clueless about what I'll live with the rest of my life. Pot/kettle/black The only disservice we can do for families of Autistic children is support the idea that vaccines cause Autism. It's a hell of a lot more compassionate to work together to find a cure. Focusing on vaccines as the culprit is a distraction from the task of helping Autistic children and their families.
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lsautism - 9/24/2008
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If your first child was a beautiful, typical child until the vaccines and then disappeared within himself, would you vaccinate the children that came after him? The United States Federal Court just ruled in favor of a family and their ruling was that vaccines caused their daughter's autism. Do I know if autism is caused by vaccines? No, I don't. Would I expect the Davis family to vaccinate their second child? Not in a million years. It is easy to sit back and pass judgement when you don't have to walk in another families shoes. How blessed you are to not have to make the decision that they had to make. But, please don't make judgements on something that you have never experienced and won't have to live with for the rest of your life.
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PLively - 9/24/2008
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The possibility of vaccines as a cause of Autism has been studied over and over. The one thing which DOESN'T cause Autism is vaccinating a child. But, not vaccinating a child puts that child and those around her at risk. If parents want to put their own children at risk for vaccine preventable illnesses that's one thing. To put other children at risk is unacceptable. For example, Haemophilus Influenza type B causes invasive infection which results in blood infections and/or, meningitis. It killed many children, and gave others brain damage or hearing loss. Funny though, I haven't seen a case of invasive Haemophilus B since routine immunization with the HIB vaccine was initiated in the early 1990s. The prevention of disease by vaccines is actual, not theoretical. The causal relationship between vaccines and autism is theoretical and, fortunately, has been disproven. Regards, Paul H. Lively, D.O, F.A.A.P
--------------------------------------------------------------------------------
iolan - 9/24/2008
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If parents reject vaccinations, their child or children should not be allowed in public schools or any other place where large crowds are. Also if their child comes down with the disease and there are complications resulting in long hospitalization, they should have to bear the cost themselves. And if it is serious enough to endanger the life of the child, they should face criminal charges. Phillip L. Crown 821 E. Broadway IOLA, KS 66749
LEE'S SUMMIT, Mo - As a baby, Tristan Davis showed all the signs of being a normal, healthy child. His parents say he met all the major milestones of a developing baby, including walking and talking.
However, for the past six years, Aimee and Joel Davis say their oldest son has not uttered a single word.
"We always describe it as a dimmer switch," Aimee said. "It was just like slowly, slowly he was fading away. And then by the age of 2, he was gone."
Tristan, who turns 8 next month, has a severe case of autism. The brain disorder affects his ability to communicate and causes wild mood swings. While playing in the backyard, Tristan has a tendency to dart off and climb fences, forcing Joel to chase him down in neighbors' yards. Inside the house, he is under constant surveillance.
What Happened?
"I definitely believe in my heart the vaccinations triggered his autism."
So what caused such a rapid, dramatic change in their son? It is a question that vexes thousands of parents who have children with autism, a disorder now diagnosed at a rate of one out every 150 children.
Looking back, Tristan's parents say the turning point was a round of vaccines he received as a toddler. Aimee said her son immediately became sick and battled through a month of various illnesses. Joel's brother and sister had also suffered adverse reactions to vaccinations, so the family assumed it could be something in the genes.
But when the parents later received the autism diagnosis from a doctor, they suspected something else.
"The timing was too coincidental to ignore and I definitely believe in my heart the vaccinations triggered his autism," Aimee said.
Not Alone
Related Links
Thousands of Unvaccinated Children Enter Schools
The Davis couple is far from alone. It is a belief shared by a growing number of parents around the country. Doctors say they are getting more questions about vaccine safety. The fear of a possible link to autism and other health problems is causing parents not to immunize their children.
For instance, the Davis' younger son, Cole, started kindergarten this year without getting his vaccine shots. The 5-year-old is still allowed in the classroom with other students because the family filed for an exemption with the Lee's Summit School District. The paperwork states the vaccines go against their religious beliefs.
"Why play that 'what if' game?" Joel said. "We're going to take it on a day-to-day basis and do what's best for our child."
Mandated Vaccinations
Courtesy: National Vaccine Information Center
Related Links
NVIC State Exemptions
Tell Us What You Think
Updated vaccination records for students are mandated by law before they enter into school districts. However, in 48 of 50 states -- including Missouri and Kansas -- parents can get a legal exemption for medical or religious reasons. Eighteen of those states have added a third exemption, which allows parents to opt their children out for philosophical or personal beliefs.
Click on the map to see a larger version showing which exemptions are allowed in what states.
In many of the states with the philosophical option, experts say the exemption rates have jumped to 2 or 3 percent of the student population. Typically, the rate is 1 percent or less. Kansas and Missouri have seen a slight increase in exemption requests during the past few years, but are still hovering around the 1 percent threshold. The exact figures can be difficult to track because they rely on survey from school districts and do not include home-school children.
In Missouri, there has been a push over the past five years to add a philosophical exemption for parents, but the idea has yet to win legislative approval.
Questions and Concerns
Should Kansas and Missouri let parents exempt their children from vaccinations for philosophical reasons?
Yes (72.7%)
No (24.2%)
Not Sure (3.0%)
Pediatricians like Dr. Scott Dattel are getting more questions than ever from parents concerned about vaccine safety. Dattel said many of the fears are fueled by rumors circulating on the Internet. However, Dattel insists there is no proof of a connection to autism, a claim that is backed by piles of medical research.
A study released in early September showed no link between the measles vaccine and autism. Those findings debunked a 1998 British study, which originally linked the so-called MMR vaccine with a subgroup of autistic children.
"Vaccines are given to kids. Autism happens to kids. I don't think there is a true link. It just does happen," Dattel said.
Taking a Risk
Dr. Scott Dattel
"These vaccines actually protect against diseases that can kill."
So what is the harm of children skipping their shots? Health experts point to this year's measles outbreak -- the nation's largest in more than a decade -- as an example. A Center for Disease Control report found the majority of the 135 people infected did not receive the measles vaccine for personal reasons.
Doctors say it has been so long since some diseases were prevalent, parents are underestimating the potential dangers.
"These vaccines actually protect against diseases that can kill," Dattel said.
Thad Wilson heads the Mid America Immunization Coalition, a group comprised of medical and educational leaders who are trying to boost vaccination rates. He said it is good for parents to ask questions and educate themselves about vaccines. But he worries personal convictions could begin to interfere with public health. Wilson said the development of vaccines ranks in the top four public health advances of the 20th century.
"I've seen a child die of measles. I've seen someone who had polio and I know the devastation caused by it," Wilson said. "If everyone is allowed to do what they want, we'll end up back where we were in the 1920s with large outbreaks."
Looking Forward
Aimee and Joel Davis are not ruling out vaccines for Cole in the future. For now, it is a risk the Lee's Summit couple is willing to take.
"Who knows? But it sure would be nice to have some answers instead of that big question mark we've had hanging over us for the past six years," Joel said.
In Missouri, there's been a recent push to add a philosophical exemption, but it has yet to win legislative approval.
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