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.

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.

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

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, 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.