Tuesday, November 16, 2010

NYS Regents - Autism 200 Regulations

I'm on many autism lists to keep up to date on Autism related news and information.  Today, the following article landed in my email.  If I haven't felt shitty enough lately about the ongong problems with the school district, this news rubs salt into an open wound.  What are the powers that be trying to do to our kids and parents who fight so hard to advocate for them:

Despite acknowledging hundreds of phone calls and emails and dozens of letters of opposition from various organizations from our community, the Regents voted the article 200 regulations into extinction - some actually chuckled while doing so. These regulations offered at least some protections for our children for speech services and class size and gave parents at least some degree of support in CSE meetings.

These regulations are now gone, dismissed with a wave of Regent Chancellor Tisch's hands.

The disdain was not universal; Some - like Chancellor Emeritus Bennett - expressed concern stating "I am very concerned that we are reducing services...I also fear that we are upsetting the balance of the relationship between parents and CSE chairs.  Regent Chapey - who has a back ground in speech, language and hearing - also stated openly that there was no research that supported reducing speech services to those with autism.  Further, Regent Cofield stated "There is distrust - We are not dealing with the distrust that people feel in the CSE process."

Some Regents like Nassau's Talis and Westchester's Phillips voiced support for the changes saying districts would take care of the families and would not cut services.
But, in the end, the Regents voted unanimously to cut speech services. Then some basically said that parents could use due process and "handle it that way." One Regent indicated that children with autism use up all the services leaving nothing for other children.

In the end, Chancellor Tisch simply stated that districts need flexibility. They voted with her. Chancellor Tisch and the Regents have green lighted school districts to cut speech to people who - in some instances - can't talk. Our children were not viewed as children with needs; they were viewed as "unfunded mandates."

I spoke to a few of the Regents - Chancellor Emeritus Bennett for a few minutes. He suggested that he was open to establishing a committee to focus on autism and connected me to an outraged member of NYSUT. My conversation with Mr. Phillips was not pleasant. I told Harry that he just did the wrong thing and he has no idea how badly he and the Regents have hurt families with autism.

Mike Smith and I spoke to the Albany Press. Later in the day, I spoke with a reporter from Newsday.

All of us who have had struggles with our children's CSEs know what is now going to happen. In this budget environment, it will likely mean the elimination of most speech services and stretching autism class rooms to the max - risking the safety of our children.

The New York State Education Department has walked away from our children. It is time to fight back.

I ask all of you to put this out on your lists and let our community throughout the state know what has happened here.

More to come.

Louis Conte
Autism Action Network

Tuesday, November 9, 2010

Is It Too Much To Ask?

Placate defined:  to pacify or appease

Advocating in special education requires parents to take copious notes, keep well documented records and follow up in letter form all interactions with the CSE chair.  There is an expression:  "if it wasn't written down, it was never said."  Writing letters to restate what was discussed at meetings is a way to hold people accountable.  It's very important school districts know parents are paying close attention and educating themselves.  It is exhausting and laborious work.  This is not to suggest that districts will not try to get away with as much as possible or sidestep the law because based on the experiences of many, it is a fairly common practice.  When I talk to other parents, similar struggles are echoed.  Parents break down emotionally and feel their concerns are discounted.  It is a very sad thing but it doesn't have to be hopeless so long as parents can bounce back up after each time they get knocked on their butts.

I live in NYS and can speak only to my special education experiences here.  I welcome comments from parents, professionals and teachers regarding their experience whether it be in NYS or elsewhere.  The education of children impacts the future regardless of where they reside.  I would love to read about systems that work and why.  It is also helpful to share information about resources used in public schools that addresses individual student needs.  Clearly, the system here is far from perfect.  Although the state and federal laws are clear about educating children to further their education, it appears parents continue to be in the position of fighting tooth and nail for appropriate accommodations.  And, if it's crystal clear to parents the district is deliberately being difficult and capitalizing at every turn on their naivety and/or lack of education, the burden remains on parents to prove it.  The idea of this is extremely troubling because many parents who send their children to public schools often do not have the financial resources to hire talented legal counsel.  The school districts will try to use it to their advantage.  Consider how dysfunctional that truly is in fact, it's downright sinister.  We have laws in place in protect the rights of children with special needs.  By law, public schools are expected to provide a FAPE to all students.   School districts will make every attempt of providing as little as possible if they can get away with it.  Further, the district will not positively assist parents to find an appropriate program that meets a child's needs.  In other words, if it has been demonstrated or recommended by a neuro-psychologist that a particular program such as Cloud 9 math is effective at helping a learning disabled child grasp math concepts.  The district will not only make every effort to veto the suggestion, worse still, they will not suggest it.  This overall lack of participation by the districts in not working with parents to educate children is absolutely astonishing.

Statute of limitations. Parents now have two years in which to exercise their due process rights after they knew or should have known that an IDEA violation has occurred. The interpretation of the language "should have known" will be critical.

I want to start by saying, I've been actively advocating for a change to my son's program since 2009.  It was clear to me as Aren was approaching the end of 1st grade, he was working below grade level.  I requested and received a referral to BOCES Salt Point when my son was entering the 2nd grade.  He was approved for the placement but the CSE Chair reneged on it reassuring me the district could meet my son's needs.  My son is now in 3rd grade, continues to be behind his peers from 12 - 18 months and demonstrates deficits in core areas:  math, reading and writing.

Every night at dinner, it's a chance for my kids to discuss their day at school, etc.  Every night I ask Aren, who worked with you today and what did you do.  Aren has become accustomed to these inquires and without my asking last night, he said "I didn't work in a group today".  I asked him if the special education teacher worked with him and he said "no".  Well, then, who worked with you today, I asked?  Aren said, the general education teacher did.  My son is in a co-teaching classroom and it is on his IEP that he''ll receive co-teaching in math and reading daily.  Why didn't my son receive support from the special education teacher?  And, if it's a co-teaching accommodation, does this mean the special education teacher provides services to my son willy-nilly?

Willy-nilly defined:  unplanned, haphazard fashion'

I'm not being as sarcastic here with "willy-nilly" as I'm concerned about it.  Honestly, everything needs to be spelled out for parents so to avoid any misunderstandings.  My son has special needs that requires a special education teacher and therefore, I assume the teacher with the required educational background is available on a daily basis.  This is how I  understand it on his IEP.  Or, maybe I'm wrong, or misinformed.  In either case, I have a preconceived idea that minimally, the special education teacher should be working with my son daily.

 So you know from my last post, I attended a full CSE meeting.  And, I dutifully followed-up with a letter acknowledging what was discussed, agreed upon and outstanding items of concern.  We agreed on stepping up the O/T to three, 40 minute sessions.  Or, as stated by the O/T, it will be two, 30 minute sessions and one 20 minute session to arrive at a total of 120 minutes each week.  Why is it broken down this way?  The O/T states she is contracted for 30 minute sessions, not 40.

The CSE chair agreed to "look into" handwriting without tears which is a wonderful program that actually works for my son.  Handwriting without tears will require the district to provide training for the O/T.  I have no idea if/when it will be approved and how long it will take for the O/T to get up to speed on the program.  I didn't have a chance to ask it and the information wasn't offered.  The only thing said, it will take time to look into the program.

A side note about handwriting without tears - if I hadn't taken my son for an O/T evaluation this past summer, I'm not so sure I would know about this program.  Although, I might have learned about it eventually but who's to say.  I mention this because it's very important parents talk to other parents and do lots of research about the tools available to help children with learning disabilities.  Do not rely or expect school districts to fill the void.  A school district that makes recommendations for quality accommodations is a rare gem.  And, if that describes your school district count your blessings and tell us about it here.  I want to know what a model, special education program in a public school looks like because where I'm sitting, I have no idea.  Parents need to put more energy into demanding quality education for their children.  It is not charity, after all.  We fund it through our hard earned tax dollars.  Yet school districts have a talent for making us feel so small for asking for the most obvious accommodations for our children.  And, when we receive the hard won services, we're expected to be eternally grateful.  A-hem.

Do you think it's a good idea for elementary school children to rise an hour earlier to ride the bus with middle and H.S. students - just asking.

Yesterday, my 12 year old comes home from school and shares a lovely story with me.  She told me that she overheard a conversation between junior and/or senior level students discussing in great detail their sexual encounter over the past weekend.  The conversation included choice of contraceptive used (at least some part of the brain was engaged) and explicit content.

The CSE chair agreed to provide much needed math tutoring for my son.  We talked about 2 days a week which is a lot more then offered previously.  With the pull-outs for services, we're concerned Aren would miss much needed academics.  I suggested an extended day to help fill the gap.  There was some agreement with one small catch.  The principal thinks my 8 year old son should rise an hour earlier to ride the bus with the middle and senior level students.  In doing so, my young child will receive tutoring in the morning.  In addition, he'll be subjected to a premature sex education by teenagers.  Further, my son has some sleep related issues where he doesn't exactly springboard out of bed greeting the dawn of the new day.  In my letter, I expressed my concern in which case, the CSE chair suggests my son will need to fore go specials such as art and music.  I continue to advocate for an extended day where my son can remain after school for tutoring. 

What is wrong with an educational system where parents must dismember part of the education their child will not receive due to special needs.  Why are parents placed in the position to decide their child doesn't need art or music because he needs math.?  This is why it's called "special education".  Children who have special needs require accommodations so that they can receive the same level of education as non-disabled children.  It is not my child's fault he has challenges that requires extra attention.  What I'm expecting for him is an appropriate education so that he will learn which means accommodations.  Accommodations are not expecting or asking for the best education.  It's expecting an appropriate education as defined by law; to meet the educational and individual needs of each student to further their education.

Today, my son arrived home without homework.  He needs remedial work but doesn't have homework.  He told me that the general education teacher's policy is that if a child forgets their homework folder, the following day at recess, the child must write 10 times they will not forget their homework.  Is this a type of corporal punishment?  I remember a similar practice when I was child accept back then, it was 100 times on the blackboard.  My son has issues with short term memory processing.  I think there should be positive ways to teach a child to remember assignments without punishment.  If anyone has ideas for helping a child remember assignments, I would love to hear about it.

Tell me and I forget. Teach me and I remember. Involve me and I learn.   ~ Benjamin Franklin ~

Saturday, November 6, 2010

Entering The OK Corral

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."  ~ Ambrose Redmoon ~

I have attended CSE meetings since my son was in special education pre-school.  It's always a nerve racking experience no matter how much preparation I do.  My stress level is way up but I try to use it to my advantage.   As always, I'm walking into a meeting heavily outnumbered.  When I attended the Education in Advocacy workshop to become a lay advocate, one thing mentioned is that there is usually one person on the school side who is a "friend" to your concern.  One person who sees not only with clarity, the challenges your child has but able to help identify with you possible solutions.  For me, it is not that easy.

The situation I have in this district is extremely challenging.  Although every parent who has a child with special needs must make it their personal mission to understand the laws to the best of their ability, it might not be enough.  Why is this?  As a parent, it's extremely challenging to separate the emotional investment we have in our children.  Unless the emotions are appropriately channeled, we're at risk of "losing it" at meetings.  Our judgement is at risk of being clouded by our emotions.  I try to offset this "disadvantage" by channeling the energy into educating myself and by aligning myself with as many other parents and professionals on the side of advocating for children.  It's a process.  Although I know a lot more now, have built up my confidence by educating myself, I need to monitor my emotions.  I force my logical and rational mind to drive at the meetings and keep things in perspective.  It is a challenge. 

This district has a agenda not to give one more resource without a fight.  It seems not to matter that their opposition to the obvious is hindering on breaking the law.  They appear to have little concern for it.  I know what I'm up against and although I have tried in numerous ways to work out my differences in a business like manner, it is not good enough.  As a result, I've made an appropriate attempt of leveling the playing field by arming myself with a special education advocate.  A person who is supposed to be on the side of children, who has a great amount of experience reciting the law and advocating for families.

What do you do when the advocate you're depending on, flips to the side of the district?  This is what happened to me.  The advocate I recruited read all the compelling information I have in defense of changing my son's classification from OHI to Autism.  In addition, the advocate was in agreement of seeking out of district referrals.  I thought I had someone who I could count on to help me navigate the shark infested district.  I want to say here, an out of district placement wouldn't be necessary if this district would provide the resources my child needs.  Further, it's a challenge where I live to find an appropriate placement for my child because he is high functioning.  Many of the schools in the surrounding area work with children who's disability tend to be moderate - severe. 

At the insistence of the district, my special education advocate was asked to observe my son in his classroom.  I was opposed to this but want to work with the district for my son's sake.  Unfortunately, often when adults are disputing over "things" where kids are involved, children tend to be negatively impacted the most.  With misgivings, I gave my "blessing" to the advocate with the promise from her that she'll remain objective.  Further, the advocate assured me her opinion wouldn't change; that the large file and documentation I've amassed substantiates the need for changes in classification and placement.

When you're getting ready to have company,what do most people do?  I know for me, I like things to be neat and tidy.  I feel good when my home is presentable.  It creates a welcoming environment for my guests so that they feel more comfortable.   Well, I can't imagine that any classroom teacher wouldn't want to present their environment in the best possible light.  That everything will be neatly arranged and prepared so as to demonstrate a positive and well managed classroom.  It's on the same level of bringing out your best china for your guests.  In fact, my advocate said to me that she's aware there is a tendency to "stage" in preparation for visits.  And, she is aware of this tactic and will not be phased by it because after all, we have compelling documentation.

As I stated above, my advocate flipped.  After spending one whole hour in the classroom, and seeing my son getting along so nicely, she decided he is appropriately placed.  I want you to know, the visit was set for 10:00 AM and it just so happens my child is at his best in the mornings.  The lessons/information presented during the visit where about things my son was very comfortable with.  In fact, it was material that my son worked on previously as demonstrated through his homework assignments.  How do I know this?  The advocate shared with me the things that were being discussed.  My advocate also told me how impressed she was with the book my son read to her.  However, when I asked her what grade/reading level the book was, she never answered my question.  I never found out what questions she asked the teachers about my child regarding tools used to help him learn, for instance.  Or, what areas are the most challenging for him and what ideas the teacher has for addressing it.  I never found out any of it.  In fact, I got the impression that all she did was sit, look and listen but not press for more relevant information.

Why am I telling you all of this?  After talking with my advocate, expressing my disappointment in her assessment, she assured me once again that when we go into the CSE meeting, the focus will be on classification change and necessary tools to meet my son's needs.  For instance, my son is behind 12 - 18 months on many academics including math.  We need to have a resource in place to help bring him up.  We agreed together, daily math tutoring is necessary.  It's clear my son's needs intensive remedial work in reading, writing and math - the three big ones.  If out of district placement is off the table, minimally, Aren's needs the additional resources in the present setting.

I had the CSE meeting on Thursday at 2:00 PM.  At around 9:00 AM, the secretary from my advocates office called to tell us, she was sick and not able to attend the meeting.  My advocate has my email address, in fact, we have corresponded often through it.  Do you think I received an email from my advocate with an apology for leaving me high and dry at what was considered to be a very important meeting?  Well, as I'm sure you have guessed, the resounding answer is a big, fat, "no".  In fact, I don't expect to hear from her again.

What I will tell you is that "yes", I went to the meeting with my husband and two children.  And, I stiffened my back, held my head high and indicated to the CSE chair, my advocate called in sick.  I remained undaunted because my son needs strong people to advocate for him.  I stated my case for my son.  I started by asking for the classification change from OHI to Autism.  It was refused because, a more suitable classification from the district's point of view is MR and that is based solely on an IQ score.  So, I guess I should feel comfortable with either OHI or MR.  Let me just say, that neither classification is suitable.  Those classifications do not speak to my son's disability, challenges and strengths.  My son is on the spectrum and his disability is probably best described as pervasive because he is splintered in his abilities.  I have in my possession documentation from several professionals that offer opinion that points in the same direction.  The school psychologist who was the first person to advocate for the MR change in June, argues that my son doesn't demonstrate the social challenges associated with many children who have autism.  I'm so sorry to disappoint the psychologist that my son doesn't present in a stereotypical way.  And, it's troubling that I, as a lay parent in regards to Aren's disability, is required to tell her to do more research in autism and that one size doesn't fit all.   That autism manifests differently and by varying degrees in children who have the diagnosis.  And, her assessment and gross misinformation doesn't dismiss the fact that my son, indeed presents with challenges associated with children on the spectrum.

The district doesn't want to change the classification to autism because it would require them to provide more resources.  At any rate, by law, they are required to educate our children at the same level as non-disabled children.  However, if you were to ask Aren's special education teacher, she would tell you classification doesn't guarantee additional services.  Well, she can hold on to that argument because I have one that's better:

Prepare Children for Employment, Independent Living – and Further Education
In “Purposes” of IDEA 2004 (Section 1400(d)), Congress describes what they intend the law to accomplish. In IDEA 2004, Congress added “further education” as a purpose of the law:
“The purposes of this title are to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.” (Section 1400(d)(1)(A))
When Congress added “further education” to the Purposes of IDEA 2004, they established a new outcome for special education, an outcome that had never been identified before.
When you read in “Findings” that disabled children should be given the opportunity to meet the “challenging expectations that have been established for all children” and “improve academic achievement and functional performance… to the maximum extent possible” (Section 1400(c)(5)(E)) and you read that one Purpose of the law is to prepare children for “further education,” you are looking at a new legal standard for a free appropriate public education.  ~ Wrights Law ~

Standoff defined:  The act of repulsing or repelling an attack; a successful defensive stand.

Tuesday, November 2, 2010

Does Classification Matter on the IEP?

"Acceptance is not submission; it is acknowledgement of the facts of a situation. Then deciding what you're going to do about it".   ~  Kathleen Casey Theisen ~
When my son was entering kindergarten, it was decided at the CSE meeting that the classification be OHI - Other Health Impaired.  The reasoning for this decision as according to the CSE chair was that there was no classification for PDD-NOS; the diagnosis we received when Aren was four years old.  PDD-NOS is an autism spectrum disorder.  In retrospect, the classification should have been autism but we didn't have the "official" diagnosis at the time.  Back then, there was just so much I didn't know about my son's disability and the special education system.  I was so ignorant and very much overwhelmed by it all.  On some level, I had a false sense of security that everything would work out.  It was short lived.  The facade quickly slipped away as I noticed that my son wasn't progressing as I thought he should.
Fast forward to present day, I recently had my son extensively evaluated as I mentioned in a previous post.  He clearly has an autism spectrum disorder and therefore the classification needs to change from OHI to autism.  The autism classification would mean my son will get the much needed services.  In fact, had he had the autism classification on the IEP since day one, some of his struggles might have been effectively addressed.  Of course, more services means a bigger slice from the district budget.  And, right now as of this writing, the school district isn't budging on changing the classification which probably has a lot more to do with budgetary concerns instead of what is necessary for my son.
I have a full CSE team meeting coming up.  And, by the way, there is an IEP my husband and I haven't agreed on since June.  In the interim, the district has been given very compelling reports and documentation supporting my son's autism spectrum diagnosis.  My intention is to flat out request for a change in the classification.  It is necessary before it gets too late and my son is at risk of slipping further behind his peers.
"Unthinking respect for authority is the greatest enemy of truth"  ~  Albert Einstein ~